It was 2007 when it first started. I remember standing up only to have the vision in my right eye temporarily blinded. I thought it was a one off situation and thought nothing of it. Soon it happened again. Then again once more. After a while it became pretty frequent but random and thought it never hurt, it became a nuisance. Thankfully it never happened when I drove.

I don’t normally visit doctors. I try and avoid going unless it’s a major issue. For example, I had a hernia when I was a teenager. I had been experiencing random bouts of excruciating pain since about grade five or six but I never actually saw anyone for it because it always went away. Eventually it became pretty consistent in my mid-teens and I got it taken care of.

Continuing on…

This eye thing became pretty consistent so I decided to do something about it. I went to my optometrist and had him not only do a routine check-up but also see if there’s something to this eye thing. After doing the routine series of tests to evaluate my prescription he decided to take a look into the back of my eye. He sat back and asked me if I had a family doctor. I responded that I didn’t because of my aversion to doctors. “I don’t go unless I think I’m dying,” I said. He looked pretty serious when responding with, “In that case you might want to go to a hospital.”

In order to save time at the hospital he took photos of my optic nerves and showed me the results. They were stereoscopic images of both my left and right eyes. I honestly thought he was showing me what a healthy optic nerve and what a damaged optic nerve looked like. The difference between the two was pretty astonishing. My right optic nerve was thick and swollen. There were purple lesions surrounding it. The lesions, he explained, are a sure sign that something is definitely wrong and that I should go to a hospital to make sure that it’s not a tumor. A tumor!

Yep. That seemed serious enough for a hospital visit.

Parking at a hospital is ridiculous and even more so when that hospital is in downtown Toronto. I took transit and arrived there around 3pm. I waited for about four hours before I was even seen by anybody and when I was, it just involved more waiting. My girlfriend at the time was very worried about the situation and got her mother to drive her to see me. It definitely helped to alleviate the waiting. While there they ran a CT scan on me to make sure that it wasn’t a tumor and luckily enough it wasn’t. The next step was to be an MRI. By the time they had decided on an MRI it was just after midnight. I had been there for nine hours and all they had done was a CT scan that showed up with nothing. They offered to let me stay until the MRI machine was available but I had spent long enough in the hospital. I opted to go home and let them call me when it was free.

The next morning they called me around 1pm and asked me if I was available to have the MRI done that day. I said that I was and asked when they were looking to do it. “In an hour,” was the response. An hour! Give a guy a little bit more notice! It takes me an hour to get to the hospital by transit! I rushed out the door and headed to the hospital as quickly as I could. I got there just in time as they were all set up and ready. I basically signed the papers and got undressed in a matter of minutes. They offered me two ear plugs to block out the noise of the MRI machine and thought I was insane when I refused one of them on account of being half deaf. After some slight protesting they let me be and I got in the machine. I think I ended up falling asleep after being so bored. It was loud but lying there for an hour was sleep-inducing.

When the neuro-opthalmologist checked out the results (two weeks later), he explained to me what the diagnosis was.

Benin intracranial hypertension.

Feel free to read that Wikipedia link regarding the condition at your leisure. It’s a bit wordy so let me explain it to you as I understood it.

Your head creates a fluid called Cerebrospinal fluid. Your body regulates this pressure by draining the excess down your spine and into your stomach. My body apparently doesn’t want to do that so there’s a buildup of pressure in my head that doesn’t really go too far. Some of the typical symptoms of this tends to be in the form of migraines, nausea, vomiting and pulsatile tinnitus. We’ll get back to that last one.

The doctor’s recommendation was that I start using meds to control the pressure in my head. After using them for a few weeks I saw him again and he asked me how things were going. The meds, in my opinion, did nothing. I could feel the pressure in my head and the temporary obscured vision was still there. He bumped up the meds and again that did nothing. We even added some prednisone (a steroid) to enhance the medication. Of course, when you’re on that you need to take something to combat their side effects. On top of that? Another pill to combat the pill that’s combatting the side effects. All of this was doing nothing for my head after several weeks and I was fed up with taking 17 pills a day. It was madness.

Prolonged exposure to prednisone can lead to a variety of severe health issues including kidney failure. I was weaned off of that and toward the end I quit cold turkey which was a terrible mistake. The depression that it leaves if you do something like that is pretty intense. After slowly reducing the meds, I was only taking the one I was originally prescribed.

The next option was to do a lumbar puncture. I watched a lot of House and thought “how bad could it be?” Have you ever seen that show? They have someone lying on their side talking about their situation or going through some pivotal plot point (before inevitably suffering some catastrophic stroke or something) but they look rather relaxed.

That’s totally not how it works. Instead of lying comfortably on your side they put you in the fetal position. As a fat guy, I don’t remember the last time my knees were anywhere close my chin for any reason.

If you don’t know what a lumbar puncture is, it’s as glamorous as it sounds. A big needle stabbed into your back to drain the CSF fluid. The doctor basically goes in ‘blind’ trying to land the needle into a sweet spot between your vetebrae. If he misses, he’ll hit a nerve and you’ll feel it. As I did. TWICE. It was definitely NOT comfortable and I have a pretty high pain threshold. This was pretty intense.

Third time’s a charm, however, and I could almost hear the spurting of my CSF fluid shooting out of my back. It was an odd feeling.

Now they say that an LP could temporarily (or even permanently) relieve the symptoms of this condition. The doctor even said to me during the procedure that “believe it or not, some people find repeated LPs to be very helpful.” I chose NOT to believe that as I never want to go through that again. Although I kind of did on my own.

A few days after the procedure I had missed a dose of my medication. I figured to get back on track, I’ll take twice the dosage. No big deal, right? Yeah. That was a huge mistake. Within minutes I was in complete agony as it felt like I was getting a lumbar puncture all over again. The pain was unbearable and there was NOTHING to stop it. I tried to lay down and that didn’t help. I tried contorting my back into unnatural positions to relieve the pressure and THAT didn’t help! I was literally at the mercy of this pain. I panicked but I rode it out and eventually it calmed down. I was sweating, gasping, and exhausted. I never missed a dose again.

At this point the meds didn’t work, the CSF pressure was very high, and there just weren’t any answers coming to mind. He did the only thing a doctor in his position would do… he shipped me off to someone else!

This new doctor took a different approach. We stopped all of the meds and he said that I needed to lose some weight (surprise). He gave me a diuretic which would help me lose the water weight. It worked for a little while but then I just gave up on it all. I was tired of pills and I was tired of doctor visits that went nowhere.

I stopped taking everything. In a strange twist… ALL of my symptoms went away! The pressure in my head seemed alright. My vision wasn’t being affected. Everything was pretty neat… except for one new symptom.

I sat in class one day and heard a very quiet thumping type noise. Not unlike something you’d hear if there was hammering a floor or two above you in a building. I looked around wondering if anyone else was hearing it or if I was being delusional. It took a little while before realizing that not only was I the only one hearing it… but it started to sound like it was going along with heartbeat!

It was quiet at first. Every now and again it would flare up but the ‘whooshing’ would subside and I’d forget all about it. It took forever to look it up. I had no idea how to describe it other than ‘whooshing that only I can hear that moves along to my heartbeat.’

Pulsatile tinnitus. That’s what it’s called and there’s no real cure for it.

These days it’s practically constant and rather distracting. I find that if it’s loud on a particular day? I’m in a bit of a daze and find it impossible to focus and be productive. I can’t sleep because it’s all I hear. I believe it definitely is a cause of my insomnia. On the days where it’s not prevalent, I find that I’m very productive. I’ll be more focused and do all the things that need to be done without any distractions or slowdowns.

So why am I writing about all of this? Because I left some information out about my workout the other night.

When finishing the first set, naturally my heart rate was up. My arms were exhausted from the dumbbell rows and the push-ups. My legs were worn out from the lunges and squats. That’s all normal and to be expected. What I didn’t anticipate was the amount of pressure that was behind my eye. I felt like my head was going to explode. I was definitely considering gouging out my eye to get some relief. I felt nauseous. I developed a migraine. All in all, it was not good.

Last night I was going to do the bodyweight exercises again. In the back of my mind, however, I’ve been paranoid that this pressure was going to act up again. I’ve never felt it when going to the gym nor has it really been as bad as it was that night. I’m nervous and afraid of it recurring when doing it again.

I know I should go to a doctor to fix this and I’m sure that I will when I’m more financially able. They’ll put me on meds again and at this point in time, it’s just not economically feasible.

Losing this weight is kind of a big deal to me. Having seen some considerable weight loss during this whole process, I am eager to lose the rest of it and get down to an ideal weight. I really don’t want this setback hanging over me. I really don’t want this to hinder any progress I could be making.

And now you know.