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?

Wednesday, October 5, 2011

The Stories of IH: Nicole Rivera

Intracranial Hypertension is a rare disease. When I first heard this and read about it, two things occurred to me: I felt very alone and I thought it would be nearly impossible to find anyone else with this disease.  However, since being diagnosed in 2009, I have discovered exactly how large a rare community can be! 
Every patient with IH has a face (as we proudly display on our facebook Wall of Hope), but every patient also has a story! Here on The IH Brain Pain Blogs I plan to bring you the stories of those patients who are willing to share them with you. 

Ten questions are asked of each volunteer so that you can get a better understanding of how IH plays a unique role in each individual's life. If you have IH, know you are not alone. If you don't have IH, see what it is all about.
I think it is only fair that I start with myself...
Nicole Rivera

1. When were you diagnosed?
 I was diagnosed in June 2009. Doctors told me that I most likely had the condition for years before the diagnosis.

2. How old were you?
I was 32 years old.

3. What treatments are you using?
 I am currently taking 1500mg of Diamox, down from 2g. I am tapering down in an attempt to be drug-free and able to bear children.

4. What has been working for you (we’ll even take home remedies here!)?
  •  The Diamox has worked for me and I count myself as grateful for that. 
  • I had an optic nerve sheath fenestration in August 2009 on my left eye which saved me from going blind. 
  • I went to a nutritionist and found out I had an intolerance to gluten and dairy. Since eliminating both of them I have experienced two benefits - weight loss and my symptoms were minimized. 
  • Caffeine works for a quick fix on the beginnings of a headache. If I just need a little more time out and about, I grab a Coke. (I think this works for me because, beyond this I never reallyhave any caffeine.)
5. What complications, if any, have you experienced?
In August 2009, I lost my ability to see color and could not even walk without assistance. When I got to my neuro-opthalmologist I was rushed into surgery.  I found out that I am a "positive responder" to steroids, which means I can't take them again, because they will ultimately lead me to early glaucoma. I also learned I will most likely get glaucoma one day.

6. How has this disease changed your life?
 At first, it stole my driving privileges. At around the same time it made reading hurt a lot. After a year of being more stubborn than I even realized I could be, IH stole my teaching career. I have become less active, less social and a little less "me" because of the disease. Once I realized this was happening, I started working hard to try to change it.

7. What lesson(s) have you learned on this journey?
  • First, I can not will myself to feel better, and
  • Moving forward does not always equal progress, sometimes you have to slow down, or even STOP, to make sure forward is still the direction that's right for you. 
  • Friends and family will understand that things will have to change, but they will only understand that when I make it clear. This disease has no bright blinking signs for anyone else to help you out and say, "Hey, Nicole, I think you need to slow down!"
8. What one message do you have for people not aware of IH?
Pay attention to your body and what you put into it. Pay attention to your aches, your pains, the things you explain away as aging, stress, or some other "normal" thing. I am not saying that more people have IH, I am simply saying our bodies are wonderful, miraculous things that are designed to let us know when something is wrong - DON'T IGNORE YOUR BODY'S "CHECK ENGINE" LIGHTS! 

9. What one message do you have for fellow IH patients?
 If you need to slow down, then slow down. If you think others will not allow this, I challenge you to ask this first: Will YOU allow yourself to slow down? Be real with yourself and your situation, we may not have a cure, but we can all still hope for REMISSION. Slow down, take time and see if you can grasp it!

10. How can people connect with you (Facebook, twitter, LinkedIn, IH Brain Pain, DailyStrength, your blog, your vlog, etc.)?

Do you have any other questions or curiosities? Post them in the comments section below!
Tune in next month for our next IH story and don't forget to 
spread the word about IH and donate to IHRF when you can!!