Sunday, March 29, 2009

My brief experience with blindness, or being on the wrong end of a horrible statistic!

About two weeks ago I began taking a medication called Topamax. I've had horrible migraines for a few years now and they're getting worse as I get older, so I finally made a trip to the doctor and got something that would prevent them from coming. I was so excited at the idea of being migraine-free and would have taken just about anything. I read through the side effects and although there were some really scary ones (mainly dealing with vision), the chance of having one of the side effects was so small that it was worth the risk.

Well, Wednesday morning (March 25) I woke up and noticed something was wrong. After several puzzled minutes where my brain wouldn't wrap itself around the fact that I wasn't seeing very well, it slowly dawned on me that everything was very blurry. And not just blurry. When I was in the living room, I couldn't even see the TV, and wouldn't have known the couch was a couch if I hadn't put it in there myself. I sat down and called up the stairs to Mike, asking him to come down. I explained that I couldn't see and asked him if there was anything unusual about my eyes. He said they were dilated and puffy and looked "odd" (thanks, dear). I told him I couldn't see and asked him to stay home from school so he could help me get to the doctor.

I made an appointment with my GP, who sent me to an opthalmologist. The most frustrating thing of all, even more frustrating than not being able to see? HE DIDN'T BELIEVE ME. Even after using his little machine thingy to determine what my prescription was, he didn't believe that I had gone blind overnight. He kept asking about anything I might have done to my eyes (while I was sleeping between midnight and 6 a.m., I might add). He measured the pressure in my eyes about 10 times (no joke) with this stuff that stung and stained my eyes and face yellow. After about a half an hour, the only thing he could think of was that I had uncontrolled diabetes and it had caused my vision change. Oh, and I forgot to mention that I developed glaucoma sometime during that 6 hours while I was asleep. So during that brief time, my vision went from -1.75 to -9.0 (both eyes) and I developed a horrible case of glaucoma. I tried really, really hard to convince him that I didn't have diabetes, and asked him to consider that it might be a side effect of the medication I was taking. He refused to consider that and sent me home with some eye drops and an order for blood tests that would prove I had diabetes.

I went home frustrated, angry, and scared to death. It's hard to explain what goes through your head when you're worried that you may never be able to see your children again, or drive a car, or read a book or sew or use the computer or any of the other things I love to do. I asked for a blessing, and the first of several miracles occurred. Mike called our home teacher and asked him to come over to assist. During our conversation, he suggested I go to the Moran Eye Center. I hadn't considered that because I thought it was tied to the University Hospital system, which isn't covered by our insurance. He said he thought it was covered by IHC, and that I should call them immediately and get in asap. Of course it was about 7:00 at night, so I had to wait until the next morning. But through all of this I think part of me was assuming I'd wake up in the morning and my eyesight would be back to normal and all of this would be a bad dream. I mean, what other alternatives were there? People just dont go blind overnight! That's ridiculous!
The next morning I woke up to this:
and this:
and this:
Pretty cute, eh? Luckily I couldn't see myself, because that would have taken me from scared to full-blown panic attack. I waited nervously until the Moran Eye Center opened, then called to ask what the heck to do. I talked to the nurse, who at first assumed I had been taken care of by the opthalmologist I had seen the day before, mainly because of how he was treating me for glaucoma. He was treating me for the chronic old-age glaucoma, but the glaucoma caused by Topamax is acute and called narrow-angle glaucoma. The nurse said there would be no way to mistake between the two different types of glaucoma, so if the opthalmologist was treating me for one, that must be the one I had, and therefore I wasn't having a side effect of the medication. Hope that made sense. This was EXTREMELY frustrating, because I didn't think I was being treated for the right thing, and I had that little niggling feeling that I really, really needed to see someone soon. The nurse called a couple more times to ask more questions about what was going on but kept telling me to wait until she could figure out who would be best for me to see and that they might not be able to get me in that day. After her 3rd phone call, I said, "Well, if they can't get me in today, can you suggest someone else who may be able to?" She said, "Let me talk to the doctor and get back to you."
By this time Mike had worn a hole in the carpet and told me to get ready because he was taking me to the ER. I told him to wait a few minutes to see if they called back, and right as I said that the nurse did call back. She said that my symptoms were so puzzling that she didn't want me to wait any longer, so I should go in to the triage clinic and they'd figure out what to do with me after. I scrambled to find someone to take care of my kids (thanks Melanie, Selina, and Karin), and we drove up there to find they were ready and waiting for me.
The nurse took one look through the eye thingy and said, "There is definite narrowing in your angle." Now I'm not a doctor, but this sounded to me like she was suggesting I had NARROW ANGLE GLAUCOMA, not the other chronic kind. She did a bunch of other tests and then walked me to another room to wait for the doctor. And even though there was a waiting room full of patients, the doctor was in my room examining me within 2 minutes.
He quickly determined that I was being treated incorrectly and immediately needed to stop the drops I had been give the day before. He did a bunch of other tests, after which he said that he believed I was, indeed, suffering from a negative side effect from Topamax. And the interesting part? They had another case of this in there TWO WEEKS AGO. Up until two weeks ago, they had NEVER seen a case of Topamax-induced vision loss. The poor woman who ended up being their guinea pig was there for close to 8 hours before they called a neuro-opthalmologist from the U hospital, who happened to be writing a paper on this very phenomenon and was familiar with the symptoms. So thanks to her, they knew what was wrong and how to treat me. That was my second miracle.
So now, 4 days after I woke up blind, I am on the road to recovery and my vision is nearly back to normal. I woke up yesterday morning (which was the day of Kaitlyn's baptism, I might add), and though everything was still a bit blurry, I could make out facial details, furniture, cars, people - more than enough to be able to participate in her baptism. And this morning my vision was even better. I think I will be fully recovered by Wednesday, making my entire ordeal just a week.
I will post later on the newfound gratitude I have for my vision, family, hobbies, etc. For now I want to marvel at the fact that had I gone to Vegas instead of deciding to take this medication, I may have won the jackpot. According to their website, there is a .0025 of 1% chance that I would have had that side effect. Wow! Pretty amazing odds! Which is probably why the first opthalmologist was sure it WASN'T a side effect. Poor guy. He called me on Friday to apologize for not listening to me and promise that from now on he'd listen to all of his patients. I actually feel bad for him.
Anyway, with odds like that, it makes me never want to take another medication again. And it also bums me out, because I don't know if there's anything I can take to get rid of my migraines. :o( But what I am grateful for is the fact that this experience has renewed my testimony of prayer and blessings and home teaching. I can honestly say that my home teacher saved my eyesight, because if he hadn't suggested the Moran Eye Center, I never would have gone there, and they may never have figured out what was happening. If I had continued with the treatment the first opthalmologist gave me, I may be blind now. Instead, my eyesight is coming back, and I have new appreciation for every aspect of my life.


Stacy Smith said...

Wow, Steph, what a story! Topamax is scary stuff- they often use it for people with my neuro symptoms. I started reading your post and the first thing I thought was "I hope she goes to the Moran Eye Center!" You probably even saw my neuro-opthomologist Dr Waner. Anyway, glad that everything turned out okay!

Andrea said...

Hi there! Found your blog through a google alert I have setup for Topamax since I started taking it about 5 weeks (or so) ago.

I haven't read any further through your blog but from the sounds of this one post, the Topamax was the first thing your doctor prescribed to you for migraines? Topamax is a very scary drug and there are hundreds of other migraine prevention drugs out there with far fewer side effects that really should be tried before going to something "extreme" like Topamax. And I'll call it extreme because it is a very extreme drug to be on! I'm very surprised a doctor would jump to one like this one without trying you on something targeted for migraines first.

Topamax is an anti seizure drug that they've found has helped some with migraine & headache prevention. It's one of those drugs your body either takes to very well or completely rejects as you've had the horrible misfortune of experiencing!

I went through countless meds before ending up with Topamax recently. Not only do I suffer from migraines but I also have not been headache free since I was a teenager. I've dealt with constant, daily headaches for about 17 years now. Nothing worked. I was started on Topamax and its been a miracle drug for me. My head has felt better then it has in almost 2 decades.

I just wanted to say how sorry I am that you had this side effect happen to you. I know I would have been hysterical! But don't give up! If you find the right med, it will make the world of difference for you!

Julie said...

I'm so sorry, I'm glad you're feeling better!