About three months ago, I was re-diagnosed with pseudo tumor cerebri, but the doctors don't like using the word tumor anymore so it has been renamed idiopathic intracranial hypertension. In other words, I have increased pressure in my head from spinal fluid and the doctors don't know why. This condition is mainly diagnosed by optic nerve swelling in the back of the eyes, along with symptoms such as headaches, neckaches and vision problems. These symptoms are usually associated with tumors which is the reason behind the original name except there isn't actually a tumor there. Just lots of fun problems with no clear cause.
I experienced this issue for the first time 11 years ago during the summer between seventh and eighth grade and it was terrible. I had all the classic signs but just thought I was experiencing extreme heat exhaustion from a pool party. However, no medications could take the headache away and I was miserable. I also just happened to start my period for the first time a week later so we thought maybe that had something to do with that. A few days after that, I went to the eye doctor for a routine check-up and that's when he noticed the severe optic nerve swelling. That, along with the other symptoms, finally sent me to the ER so they could run some tests and try to figure out what was going on. I had a spinal tap done and through that test learned that my cerebrospinal fluid (CSF) pressure was extremely high and they needed to drain 30 mL of fluid from my spine. Although I threw up right after the test, I immediately started to feel better because most of the pressure had finally been relieved. The doctors had me take a diuretic for awhile to make sure I kept the fluid off and I visited an ophthalmologist for a long time to monitor my optic nerves. Other than that, everything went away and I felt great.
Fast forward 11 years later, I started feeling the same things again. Being a nurse now, I am able to recognize problems pretty quickly and I also overthink EVERYTHING. So when I started experiencing daily headaches and painful neckaches my mind immediately went back to pseudo tumor. This time however, I started noticing weird vision problems and whooshing in my ears that I didn't have the first time and that's what really freaked me out. I knew something serious was going on and I couldn't just overlook that. So I went to my primary care doctor who recommended that I go to the Moran triage center to have an eye doctor check me out as well. I went the next morning and after waiting almost an hour in the exam room (yay healthcare) he finally took one look into my eyes and saw the swelling. And there you have it, diagnosed with pseudo tumor cerebri again, or now termed idiopathic intracranial hypertension. This doctor didn't want to deal with it however, so he had me set up an appointment with a neuro-ophthalmologist instead. Luckily I got scheduled within two weeks rather than the usual two month wait. He didn't even need to dilate my eyes to see the swelling so we decided that the next best step would be an MRI to make sure there actually wasn't a tumor in my brain, and then if that came back normal we would do another spinal tap to check my pressures and test for any infections. So we moved forward. I was also started on the same diuretic I took 11 years ago as well as a medication to help with the headaches.After completing a 30 minute MRI while listening to Michael Buble and jazz Christmas songs (apparently that's what Pandora thinks people want to hear when they request Michael Buble?), everything came back normal and I waited three weeks to finally schedule my spinal tap. I guess it's also appropriate for the neuro-ophthalmologist and his scheduler to go on vacation at the same time so patients can't have anything done for weeks? Hey, even though I work in healthcare I clearly still have some issues with how things are operated. Anyway, spinal tap day came. They injected me with the lidocaine and then stuck the needle into my spine using x-ray. I could feel it every time they advanced it or switched directions and she had to take it out and put it back in at one point. It was pretty painful. When they tried to pull fluid out, nothing was coming so they decided to turn me on my side and advance the needle deeper. That was probably some of the worst pain I have ever experienced because the needle would hit just the right nerve and send shooting pains down my coccyx or down my leg. Let's just say I was glad that I was turned away from them so they couldn't see the tears in my eyes haha. They finally got some fluid and I had to stay on bedrest for the rest of the day. My back was pretty sore for a few days but other than that I didn't experience any other complications. I got my results back and it said my opening pressure was 22. Depending on what you Google or who you talk to, this could either be considered high or normal. Apparently my neuro-ophthalmologist thinks it's normal and all my labs came back negative as well. I have a couple guesses as to why my pressure was "normal" this time: I caught the issue much sooner than I did the first time because I recognized the symptoms and took action right away. I also started the diuretic BEFORE the spinal tap which could have lowered the CSF amount, as opposed to my first spinal tap experience. Either way, it seems like my doctor doesn't want to do much since it's "normal."
So here we are. I don't feel any different than I did three months ago which is a little disappointing because I was hoping that the spinal tap would help like it did last time. The medications actually did help at first because I wasn't having headaches anymore, but now I'm starting to get them almost every day again. My vision problems make me really really dizzy whenever I stand up (to the point where so much light rushes into my eyes and I can't see anything for a few seconds). The stupid whooshing is still in my ears and I have a hard time hearing. Needless to say, this isn't very fun to deal with.
But here's the best part. Since the doctors don't know what causes the intracranial hypertension, they collectively decided that weight loss is the best solution (cue the eye rolls). If you look up IIH on the internet, you'll find that this problem is most common in overweight women of childbearing age. The reason this frustrates me is because I personally feel like doctors use weight loss as the catch-all to every problem they can't figure out. Now maybe losing weight really is the answer to IIH, but if it is, why didn't the problem surface when I first started gaining weight several years ago? Maybe it's been slowly building up over the last few years? But why would it show up right after I actually lost a little bit of weight this year? Why don't more overweight women my age and older have this issue? And why did it first show up when I was only 13 years old? Clearly I have lots of questions and I'm sure it's just as frustrating for medical professionals who don't have the answers.
You would think this would be the kick in the pants I need to take losing weight more seriously but it's still a daily struggle and it's something I've fought with for YEARS. I think I'm starting to find better ideas and more reasonable weight loss solutions for my life and I know I can do it because Jordan and I both lost weight earlier this year when we stuck with a program. I just need to find that motivation again but this isn't something that can happen overnight which is why I wish I could find another solution to the IIH in the meantime.And that brings me to this next part. The neuro-ophthalmologist's office sent me a packet about pseudo tumor and it mentioned something I hadn't heard before. The packet explained that in this condition, CSF outflow is blocked and the reason for decreased outflow is not clear. It did mention however, that hormonal influence might play a factor and this got me thinking. Yes, I have had some hormones tested in the past but not extensively. A coworker and I had had a previous conversation about a Nurse Practitioner that she was seeing for her hormone issues and I thought I would take her up on getting that information. Another coworker also asked if I had gotten any second opinions and I realized that I never had. That was kind of an "ah ha" moment for me as well. I used all of wonderful advice I received to schedule an appointment and I finally saw this provider today. We talked about all of these different issues and I'm going back on Friday for a physical exam and to do a thorough hormone workup just to test everything. Even if they all come back normal (which at this point I wouldn't be surprised about), at least I could rule that out as a cause. Because I have received so many disappointing answers and results in the past (and by that I mean everything comes back normal even though there is clearly a problem), I'm trying to remind myself that it's important to take those negative results and learn to move forward. Although it may not be the answer I wanted, it's still an answer and I'll never have to wonder "what if?".
So that's where we are. Hopefully by some time next week I'll have the results regarding my hormone levels and my provider and I can make a plan regarding those answers, whatever they may be. I also messaged my neuro-ophthalmologist last week and still haven't heard back but I have a follow-up with him at the end of September so we'll see what happens there. Stay tuned for more updates!
