IIH, it’s not HII backwards…

March 18, 2009

I was recently diagnosed with “idiopathic intracranial hypertension” (or pseudotumor cerebri as many know it). I don’t want to get into the specifics of the illness, necessarily, since it’s so much easier to let wikipedia do the technical dirty work for me (click here for an explanation of IIH). I have decided, however, to be candid, and use this blog to share my journey thus far, the ways it has changed my life in the short-term, and ultimately in the long-term as well.

In late January, I came down with a headache. It was unusual for me, and like most Americans, I ran to the computer for insta-diagnosis. I had just started my period, and it had to be a “menstrual migraine” (quite common, I discovered). I thought little of it over the next week, pitying myself now and then, but a week passed and the headache didn’t let up. Then another week passed. Now I was worried.

I went to my GP, and explained the situation. She examined me. I was convinced it must be some sort of sinus infection – in the sinuses behind my eyes and eyebrow. Nevermind I had no cold leading up to it, no post-nasal drip – it had to be a sinus infection. She was unconvinced, but gave me a script for antibiotics, with a word of warning – if the headaches didn’t go away, she’d refer me to a headache specialist because headaches can be tricky.

I went home, down pills for a few days, but nothing improved. I started to panic. Did I have a deadly mold-spore sinus infection? A tumor? Was the bone infected and rotting away? Would I need roto-rooting through my nose and into my sinus cavities? What was happening to me? And more importantly, when would it stop???

A month had passed. After a weekend of huffing humidified air over the humidifer, things escalated to an intolerable point on Monday morning. My eyes were unable to focus on what I was looking at, the pain was excruciating – it was time to go to the ER. I ended up in a local hospital, and when I was finally seen it was only by a nurse practitioner, who seemed to immediately have it in her head that the headaches were “just migraines” but she took me for a CT anyway. The CT came back clear, and the NP came into the room and said “Everything looks fine, we’re just going to give you some vicodin and you’ll have to ride it out.”

Thankfully my mother had driven down (2.5 hour drive) to be with me in the ER. Nevermind that I’m 27. when you’re in that much pain you need a clear-thinking advocate. My mother asked to see the ER physician on duty. After a wait, he arrived to meet with us. After listening to my complaints, he ran some other test and dilated my pupils at which point he noticed some disc swelling. It was the first time I had ever heard of “pseudotumor cerebri” — and he was fairly convinced I might have it.

Flashforward a few days, I meet with a neurologist for a consult. Unfortunately, the only way to test your spinal fluid pressure is with the dread lumbar puncture. I have always been needle-phobic, so you can imagine that when it came to a 9 inch big-honking needle jammed in my spinal column, I was less than enthusiastic. Thankfully, a family friend is the head of radiology at the medical university where I was undergoing treatment, and he was able to perform the LP.

I must admit it was muuuuuuch less traumatic than I anticipated. The pre-procedure blood draw prick was worse than the LP. I have heard mixed stories about LPs, but speaking from my experience, having a radiologist perform the LP under the fleuroscope was a god send. It was one poke, virtually painless, and not even uncomfortable. He kept me laughing through the whole thing. Normal spinal pressure is around 20, and my opening pressure was 42. Welcome to IIH.

I thought I was going to be one of the lucky ones to get away without the dread “low pressure” post-LP headache, but within 24 hours, I felt like I had the worst hangover of my life. Sitting up or standing was INTOLERABLE. The only time I got up to do anything was to drag myself to the restroom – which was an almost faint-inducing wave of pain.

Low pressure headaches are caused by a slow leak that results once the puncture has been made. More or less your brain and nerves have less goo to float around and play in, and that makes them cranky. REAAAAALLLYYY CRANKY. Cranky in ways you’ve never known. Thankfully, there is a procedure called a “blod patch” in which blood is drawn from the arm and injected into the epidural space (I believe, again…consult wikipedia and don’t try this at home) using a similar needle/procedure to the lumbar puncture. The blood creates a clot which (hopefully) stops the leaking spinal fluid.

Post blood-clot I felt immediately better, but had to spend a few days laying flat and still (no coughing, laughing, straining) and willing the blood clot not to pop out and uncork the hole. Once it had set in everything was grand. I have heard that giving an immediate blood patch isn’t effective, and that optimal time to blood patch is 48 hours after the lumbar puncture, for what its worth.

I’ve said a mouthful. If you take anything away from this let it be the following:

1. Lumbar Punctures are not as bad as you think. They’re not something I’d like to do everyday, but I promise its really not that bad.
2. There are people all around us suffering from illnesses and conditions that may not show externally, but they are afflicted internally. Try to practice compassion and understanding. Even though they may not wear their pain on the outside, its no less real.

in upcoming posts I’d like to talk more about my course of treatment, much of which includes weightloss and altered eating habits. For now, I bid thee all goodnight. It’s 9:00 pm and I’m so tired.

I’d like to say going to bed this early is caused by my illness, but it’s really just me getting old and boring. Shame, shame.


5 Responses to “IIH, it’s not HII backwards…”

  1. GµårÐïåñ Says:

    It’s been a while. Good to hear from you. How have you been?

  2. Kristin Says:

    Wow, your story is so similar to mine! I’m 26 years old and have had chronic intolerable headaches for years. I’ve discussed them repeatedly with my GP who consistently wrote them off to my high-stress job, and my crazy hectic home life (I’m living with my “man”, and my two girls, a disabled 4-year old, and a 2 year old). So I’ve lived with these headaches for a while. Then, within the last 4-5 months, I’ve been losing patches of my vision to gray areas, and geometric flashes of light. I thought for sure I it was due to eye strain from looking at my computer all the time, and the constant night driving that I do for work. So, I figured I needed to get some glasses. I made an appointment at my local optometrist, and decided to go with the “Optomap” option as part of my comprehensive eye exam (basically, its where the optometrist takes a picture of your retinas digitally instead of dilating your eyes, well worth the extra $29 in my opinion). Before looking at my pictures, we completed the typical eye exam tests, ie. read line 1, line 2 bla bla. Then we looked at my Optomap results. As soon as the images came up on his screen, the doctor said, “This is definitely not normal”. He pointed out my bulging discs that are attached to my optic nerves. He showed me where the tiny veins attached to the discs were hemorraging. He immediately said, “This is papilledema, this could be a brain tumor”. Freak me the hell out, why dontcha! I came in thinking I needed glasses (which I don’t need at all, ironically), and found out I could be looking at a brain tumor? What the?! I was immediately sent to my GP. He yelled on the phone to his associates that I needed to see an Opthomologist NOW as my blood pressure was up to 148/94 and I had a fever of 100.7 (completely fear induced). I was sent over to an Eye Institute that has an Urgent department where they conducted all sorts of tests. They scheduled for an MRI for early the next morning. So in one stupid day, I went to three doctors who confirmed my papilledema diagnosis, but no one could tell me what was going on, or why it was happening. The next day, the MRI concluded that my papilledema is due to pseudotumorous cerebri (two cysts found, one on each side of my brain), and an increase in cerebro-spinal fluid. I went and saw a neurologist the day after who has placed me on a prescription medication to attempt to decrease the pressure in my brain. (Apparently, once you start seeing visual effects, you’re prtty far gone and close to losing your sight). I get my spinal tap next week during which they will be draining off an extra 30 ccs of spinal fluid. Then, I get to go back to the opthomologist to get the discs that are attached to my optic nerves punctured to keep the fluid flowing there too. (Weeeeeee!) If my meds aren’t effective enough to keep those fluid levels down, I will have to continue to get frequent spinal taps to keep draining off the excess. Worst case scenario, I’m looking at getting a shunt placed (which I’m totally terrified of, thats actual freakin brain surgery! I’m only 26!). Its been a whirlwind this week, that’s for sure. I look forward to hearing about your progress! If you have any tips or tricks, I would love to hear them as I’m wigging out over this whole thing! Thanks for your post!

    • chris Says:

      Hi, My wife is currently going through a very similar thing. Initially she was treatd for Chronic Cluster headaches for 8 years. The only drug that worked for her was lithium. It was aparently the Lithium that caused the raised intercranial pressure. Her Lumbar puncture prssure was initially 42 and she was loosing some vision as wel as having a high pressure headache. Numerous lumbar punctures and 6 weeks later, the pressure keeps rising despite being on a mix of Diamox and topiratate and being off the Lithium. She’s now looking at a shunt I think and on top of that, can’t take the Lithium any more for her cluster headaches so they’ll come back. Although scary, the shunt should mean no mre LP’s at least. Cluster headaches are different things all together but just her bad luck to get both. worth a look at Cluster info on the net if anyone wants to cheer themselves up. It’s terrifying reading.

  3. Amelie Says:


    It’s amazing how these sudden health issues can pop up out of nowhere. One day I thought I had a sinus infection a few days later I’m wedged in an MRI machine then having a needle jammed in my spine. Thankfully my images were all clear, but the spinal fluid pressure is high and still causing papilladema and mild tinnitus (which I find to be the most annoying of all the symptoms). My doctors have encouraged me to lose as much weight as possible ASAP (they don’t know why, but they have noticed that there is a correlation between weightloss and PTC remission) so now I’m full of spinal fluid, starving, and the Diamox makes diet coke taste awful — which means I’m deprived of caffeine. Wah. 🙂 I hope your condition improves, there is a GREAT group of people in the PTC support group at http://dailystrength.org … and check out the IHRF if you haven’t already.

  4. Ex Girlfiend Says:

    I can tell that this is not the first time you mention this topic. Why have you chosen it again?

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