Monday, October 24, 2011

Tapering Off Diamox

I tried in January/February to taper off my 2g/day dose of Diamox, but by week 2 the horror returned: sparks before my eyes, head pain, shoulder/neck pain and even my back got into the act. Once my body starts to react in such a way, it doesn't take long for my other ailments from IBD to kick in as well. One thing was clear: this didn't seem to be working.

Finally, on the day that would begin week three, I opened my eyes in bed, ready to wake and had to literally grab the headboard of my bed because the entire room, no, the entire world was spinning around me. When I finally felt safe enough to let go, I grabbed my iPhone from my nightstand, e-mailed my nuero-opthalmologist about what was happening and said, "I am going back to four pills today. I don't know what else to do." In his true nature, he wrote me back within ten minutes, agreeing that I should do this until I saw him again - which wouldn't be for another four months.

I didn't see him in four months because I had my appointment wrong. I thought it was June 17th, it ended up being June 7th - I found this out on June 7th 10 minutes after my appointment and 40 minutes away. I made a new appointment for August, but by July I was getting the itch again.

For reasons I don't remember I, of my own volition, decided on July 18th to try again. I remembered our plan:
  • 3 pills (500 mg in the morning and 1000Mg at night) for 3 months, then
  • 2 pills (500 mg in the morning and 500 mg at night) for 3 months, then
  • I would see my doctor in between and discuss what happens next...
This time I decided to start without him and see him during the first three month period.

It worked. I don't know if it was the weather, or if I had, in some way improved, but from July 18th all the way through October 18th the "new" symptoms have been relatively minor. More headaches? Yes, but I'm not working anymore, so they don't interfere with much. And, an incredible positive is that I have noticed a slight improvement in the blurriness of my vision (prescription is still the same). When I saw my NO in August he said he can't think of any reason why this shouldn't work. My optomologist seems to believe that it's "about time" that I go into remission.

With all of this news I've been pretty excited. However, October 18th scared the heck out of me anyway! Only 1000mg of Diamox after two years of 2000mg being the only thing keeping me from blindness, shunts and pain??? It's what I'm dreaming of - a drug-free body, ready to bear children, but is it a realistic dream?

Today is October 24th. I am one week into my "two pills" - there's no pain today, but I am having a hard time focusing and remembering short-term. This is feeling oddly familiar. The day is swirling passed me and I can't seem to grab on to any part of it. I had breakfast and took a shower, but I can't seem to figure out what to do next - laundry? dishes? something else that I can't remember?

The logical/human side of my brain keeps screaming, "Nicole! Pick one and just do it!" but the whoosh if I will call it that keeps standing in my way. Silly questions attack my senses:
  • How do I begin it?
  • What do I do next?
  • Should I be doing something else?
  • Do I have enough time to do these things?
  • Will I be able to do it?
And then I keep thinking, "Maybe today is just ONE bad day. Maybe TODAY I should just go chill out on the couch with the dogs until this passes..." I'm praying it passes. Please just let this be TODAY. Don't tell me this is about my so-far successful tapering off of my Diamox!

I think I'm heading to the couch. I think I might have already started some laundry, so I'll check that first (I used to leave laundry in the wash all day when symptoms were bad. I list "laundry forgetfulness" as one of my most annoying symptoms of IIH!), but I'm going to hope that this is just TODAY. I am going to hope that there is some weird rainstorm on the way. I am going to hope for better. I am going to believe in tomorrow and I am NOT going to give up!

Plus, I have to remember: "It's never too late to start a day over!
I still might feel better a little bit later :)

Anyone else doing the taper tap-dance? How's it going?

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