When the Ophthalmologist told me back in October that my optic nerves were back to normal and it was time to get off the Diamox (you can catch up on that news in this post: Some Really Good News!) it took everything within me not to burst into tears of relief and joy right there and then in his 1980’s inspired office.
The eye doc was delighted with my progress, as was the Sweary Neuro Bloke when I saw him a few days later and together they made a plan to get me off that awful medication called Diamox. Hooray!
(If none of this is making any sense to you, this post will help: Living With IIH)
It’s been a gradual process to get off Diamox and at the peak of things I was taking eight tablets a day in an effort to reduce the swelling of my optic nerves.
By November I was down to five a day and by the end of January I had dropped back from five tablets a day to three. I know that going from five to three tablets doesn’t sound like a huge difference, but it really was.
The side effects of Diamox aren’t a lot of fun (constant nausea, really painful tingling in your hands, feet and lips, a weird taste in your mouth that never goes away, tiredness with the occasional dizzy spell thrown in for good measure) and after cutting back from five tablets to four, I instantly felt so much better! Like the old me was on her way back. YES!!
I had energy again, I was off that damn couch and for the first time in over 6 months a sip of champers didn’t taste like metal (a very important break through, I’m sure you will agree!)
But the minute I dropped back to three tablets, I started to get headaches again, which is never a good sign when you’re battling IIH. It usually means the excess fluid that your body has so kindly decided to produce has returned and is putting pressure on your optic nerves which causes headaches and vision loss.
Unfortunately a visit to the neurologist last week confirmed my fears. The swelling has returned and so it’s back to five tablets a day.
On a random side note, the neuro didn’t swear once during my consult, which was most disappointing.
He did however apologise for having to put me back on so much Diamox. I told him the only time he ever needs to apologise is when he has to send me for another one of those god awful lumbar punctures.
He laughed, somewhat nervously I might add, and put his pen down very slowly.
Which kind of made me wonder if he was about to write a referral for a lumbar puncture and did I just manage to successfully weasel my way out of one?
We then discussed where to from here, because five diamox a day is five too many. So how do we sort this out?
1. Weight Loss
I’ve lost nearly 15 kilos since being diagnosed with IIH, all under the guidance of an Endocrinologist and his side kick The Food Nazi (who is actually a Dietitian, but you know me, it’s much more fun to give these people interesting nicknames!)
Wearing eb&ive Carmel Cape, Country Road Scoop Neck Tank, Katies Fashion shorts (not current)
If you’re interested in reading about what I’ve been eating in the last 6 months, these posts will give you an idea: My Day On A Plate and A Weight Loss Update For You
Despite this, the neuro thinks losing a bit more weight might help reduce the optic nerve swelling situation that’s going on at the moment, so it’s back to eating like a rabbit for the next little while.
2. Exercise
Exercise isn’t really something I love to do. I’m not one of those people who leaps out of bed in the morning and want to head out the door for a run.
In fact, you know that endorphin thing that exercise lovers bang on about? That thing that kicks in after they work out/go for a run/smash a pilates session/whatevs that leaves them feeling REALLY good? I’m 99.9% certain I am missing that gene.
I told my Endocrinologist that and he suggested I do a combination of water walking at our local pool and actual walking around our local area. So that’s what I’ve been doing and you know what? I actually kind of enjoy it!
Wearing City Chic Scoop Back T-Shirt* (XS), City Chic Underwire Sports Bra*, 3/4 Sport Leggings* (XS)
For further outfit details, head to this post: Introducing City Chic Activewear
3. More Ugly Waiting Rooms
For the next little while it’s back to spending more time in unattractive waiting rooms.
I’m off to see the Ophthalmologist on Monday to hear what he thinks of this latest development. Then it’s back to see both the Endo and the neuro in March.
The neuro said to me last week, “This whole thing is like a bit of a dance. You’ll take a few steps one way and a few steps another. At the moment we’re stuck in the middle of the dance floor and we need to make our way off it.”
I quite liked that analogy and I’m doing everything I can to make my way to the edge of the dance floor as quickly as possible. Let’s hope that next month I can tell you I’m almost there.
But enough about me. How are things with you? Been sitting in any unattractive waiting rooms lately?
* Affiliate links, meaning I may receive a small commission from purchases sold via the links. You don’t pay any more.
Leave a Reply