Warnings for: medical issues, some carelessness on the part of medical practitioners, weight loss, eating disorders
It all started Feb 1, 2016. It was a Monday and before going to work that day, I went to the optometrist to get my eyes/prescription checked. I have no idea what set it off, at first I blamed the eye exam, or the fact that I went outside/drove too soon after getting dilating eye drops, while everything was too bright. It could have been triggered by those things but honestly I have no fucking clue why my head chose then. All I know is I got a headache that day, one that didn't go away.
By Wednesday/Thursday the headache was really taking a toll on me and I had started commenting on it to coworkers and friends. On Friday, with my headache still pounding away, I sort of lost my vision for about 30 minutes? And because I think I'm a hypochondriac but am actually the opposite of one, rather than say anything about it (I was at work), I made my way to the server room and changed the backup drives because that was something I could do by touch while my eyes were putting on a flashy light show that was preventing me from being able to see anything properly.
My roommate, diurnal_lee, often gets optical migraines and, even though I'd never had a migraine before, I figured that must be what was going on. Over the weekend I tried to baby my head in the hopes it would go away, noticed I was light sensitive like a lot of people with migraines are, and figured that proved it was a migraine. I took Monday off work but it still didn't make the headache go away so on Tuesday I finally gave in and made a doctor's appointment for that Thursday.
Now my normal doctor was taking an extended vacation and had brought another doctor in to cover for her while she was gone. The other doctor was very nice but was kind of young and inexperienced, I think? Anyway, when I told her what was going on and how I thought I had a migraine she was very concerned and I had to do a whole battery of neurology tests. Even though I wasn't showing any sign of a stroke she was still very concerned that I was possibly bleeding in my brain (which where her exact words, but where delivered in a way so that I didn't immediately freak out?) since I shouldn't have had a headache this long, especially if I don't have a history of it.
She wasn't entirely sure what to do next but she sent me off and said she'd get back to me (though, in retrospect, sending me off driving while possibly bleeding in the brain doesn't sound like the best idea?). I originally planned on grabbing a quick lunch then going back to work but while I was standing in line at Timmies, it suddenly hit me that she said I might be bleeding in my brain and I started crying. I ended up emailing my boss saying I wasn't going to make it back in that afternoon then calling my (retired) dad to find out if he was home. Which caused him to immediately freak since I didn't want to explain what was wrong over the phone but I was still audibly crying so he knew something was wrong.
He and my mom met me when I got there and we all got really upset over the possibilities. Then I made my mom go back to work - she was the local librarian and she wouldn't be able to get someone to cover for her on such short notice and I didn't want to close the library for the day just so we could cry about possibilities. The doctor ended up calling me soon after my mom left, actually, and said she had arranged for me to get an emergency CAT scan and to get to the ER.
The CAT scan was showed I wasn't bleeding in the brain but also didn’t show anything to suggest what was wrong. The ER staff assumed I was having a migraine, gave me some meds for it and sent me home, starting my 9 months of pain and confusion. Everyone tried moving forward assuming I had a migraine, which it certainly felt like but in specific ways it wasn't acting like a migraine. Like, the fact that I was having migraines all day, ever yday and had weird responses to migraine meds.
For those that don't know, most people who suffer from migraines can stop them pretty effectively by taking a drug from the triptan family if they find one that works for them. An individual might respond better or worse to specific triptans (which is why there are so many) but generally if a triptan stops your pain, it stops your migraine until the next one starts up. This is ideal if you rarely get migraines but it gets more complicated if you get them more often since taking too many triptans in a period of time can fry your brain one extreme or give you rebound headaches on the lesser extreme. For example, the person I know who has the worst migraines and gets a couple a week can take a triptan and her migraine will go away for a day or two before the next one hits. With me I got hours.
The longest ~relief~ I got from a triptan was perhaps 12 hours, 10 of which was spent sleeping. If I was awake the whole time I'd get 3.5 hours. To be fair when the pain came back it was generally a lower level, but because of the limited doses available and possible brain frying if I took too many I generally held off on taking a dose until I was at a 9-10 on the pain scale, taking one would put me back to a 5-6.
There was a lot of frustration during this time period. What I had was clearly beyond what the fill-in GP could diagnose but she kept hesitating to send me to a specialist and even when she did there was a 6 month wait for an appointment. We were trying different meds but in such small doses they were useless. At one point before my GP came back from vacation but after the temp-GP left I got an appointment with another doctor at the medical clinic, who clearly didn't want to get involved with my problem. I described how I was barely coping, how I'd be in so much pain at work that I barely got things done and when I got home I'd spend the night sitting in the dark doing nothing and sleeping 10+ hours a night. She patted my hand and proclaimed that I seemed to be in a "reasonable" amount of pain, then gave me a fuck off prescription that left the pharmacist taking me aside to say "what is this? this is useless! a normal dose is 10X this amount! they should be sending you to a pain clinic."
When my GP did finally come back from vacation I kind of dumped it all on her and she was like "OK, give me a minute to read the notes." Then she took off her glasses and said "I don't know what to say to you but your case was seriously mismanaged, I don't know what they were thinking giving you pediatric doses, but we're going to figure this out and I am going to get you better." Which honestly left me sobbing in the parking lot after the appointment because I had been losing hope at that point (it had been at least 2, maybe 3? months). When my mom had an appointment with her the next week she cried all over the doctor.
I'd like to say things got better quickly from there but they did not. We set up weekly visits with my GP while waiting for the appointment with the neurologist and were still running into the problems that I just wasn't responding to typical migraine treatment. I eventually got to the neurologist and was sent for MRIs and the like, but it took a full 9 months of daily migraines (during which I kept working full time) before we finally got a breakthrough: the MRI showed that the sinuses that help hold my brain up where misshapen. I was sent for an eye exam (which didn't show anything) and a lumbar puncture to measure the pressure in my head, and yep, it was out of whack too at 28.5.
A normal pressure for your cerebrospinal fluid (CSF) is between 10-18 (according to wikipedia when I checked just now, though I believe I was told 7-15 is the normal range?), I've been told anything over 20 generally requires medical intervention, and to give you an idea of extremes: someone who was in a car accident and has brain swelling and other pressure issues that leave doctors afraid of brain damage is probably ~50).
Having high CFS pressure (>25) without any cause (ie. head trauma) generally indicates idiopathic intracranial hypertension (IIH). It's pretty rare and is often known by its historic name (which I personally hate for some reason I can't explain): pseudotumor cerebri. There's no known cure for it, though people have been known to go into remission and I'm currently probably as close to remission as I'll ever get. The fact that it only took 9 months to get a diagnosis is pretty amazing. When I was researching it there were so many stories of people going years, decades even, before they got a diagnosis, most people assuming it's migraines or that women (because it primarily effects young overweight women) are just whining, until they go blind. In fact, I get the impression that until maybe 10 years ago the most common way people got a diagnosis is that they'd show up to an ER blind? But that's just based on anecdotal evidence and the few of the more readable medical texts being aimed at ER doctors.
You know how I said I was sent for the lumbar puncture and an eye test to check to see if I have IIH? And that the eye exam showed nothing? That means I have an even rarer form: idiopathic intracranial hypertension without papilledema (IIHWOP) and is actually good news as it means I haven't shown any signs of going blind yet. With the increased cranial pressure the brain and optic nerves tend to get squished. My brain has been squished a lot, which was what was causing the headaches but luckily my optic nerves look fine? Which I've been reassured of by multiple doctors even though I find it hard to believe. One of the more visible changes wrought by this is that, due to my light sensitivity, I tend to wear sunglasses all the time, especially inside if there are fluorescent lights. I also get weird optical things fairly often like a semi-permanent fiery ring in my vision, as though I had looked at a bright light and the after image won't fade. Also sometimes colours change, deepening or lightening along with my pulse, but actually that's happened pretty much my whole life and I only recently found out that's not normal?
Anyway, getting back to 2016, I got a diagnosis in October and was immediately put on Topamax to combat it. Topamax is an anti-seizure med, though one of the things you quickly learn with a neurology problem is that any med for the head can be used for a huge array of head problems. Topamax is supposedly the best med to take if you have IIH and I'll admit when I first went on it, I thought it was a miracle drug. It worked in the way all the migraine meds didn't. It was like moving a mile when I was used to struggling for inches and it was amazing. At first.
I was given a schedule that would allow me to slowly and safely increase the dose, though my neurologist gave me flexibility to move more slowly if I wanted/needed. At the beginning I followed it fairly closely until I hit a point where I could slow down. I didn't feel like I needed to increase the dose because I'd be pretty pain-free for a while. That would last a few weeks before the pain would creep back up up and I'd need to increase the dose again. This lasted a month or two before the opposite started to happen; suddenly I couldn't safely increase the dose fast enough.
To make matters worse, the drug wasn't without side effects: it left me confused and unable to think as well as I had been able to before all this; it was honestly making me stupid. It also started to steal words from me. I wasn't able to speak very smoothly and kept reaching for words only to be unable to find them, I could compensate (if not with complete dignity) if I was talking to someone, but if I was writing? All bets were off. My writing became atrocious. Sentences didn't always make sense and my grasp of phonics went... weird.
In English there are a lot of homonyms and it gets even worse when you do it on a phonetic level, ie. there are multiple letter combinations that produce the same sound and I kept mixing them up, no matter how common or uncommon they were. The most blatant example I can think of is that occasionally qu makes to same sound as ck. Ex. cheque and check are homonyms. This led to me swapping out the ck for qu in at least half the words that feature ck. Fuque has a very different panache than fuck, ya know? My writing was so bad it was illegible, not even spell check knew what I was attempting. The drugs were making me illiterate (not all of it has come back, either, I suck at homonyms when before they were the one thing I was good at).
If you doubt how much pain I was in and what a big deal it was to no longer be in it, even with these horrible side effects I was reluctant to ask to switch meds and promised myself I'd go back on it if what we tried next didn't work as well. Honestly, the realization that I was soon going to hit the maximum dose and then what? featured heavily into my final decision to ask to try something else. Fun fact: I know a couple people who have gone on Topamax and I seemed to have the best experience with it, so I'm pretty confused over how it's the ~better~ drug. Also, its biggest off-label use is as a weight loss drug, and I can't imagine hating your fat so much that you'd be willing to go on this drug. O_O
Luckily my neurologist agreed that those side effects were too much and switched me to Diamox. I had one person with IIH describe Diamox as a "dirty drug" with the implication that it's better than nothing but not anyone's dream drug but luckily they were wrong in my case because it has turned out to be my dream drug.
I still have issues, the worst of which is that I'm now forever cold. I wear multiple layers all year round and winter has gone from being my 2nd favourite season to the enemy. I have the approximate blood pressure of an empty fire hose and have occasionally wondered how I was managing to stand when my diastolic slipped off the charts (a healthy diastolic is 80, anything under 60 is considered "low", my normal is ~55 but I've dipped into the 30s). I'm actually a little above the maximum recommended dose of Diamox but it's incredibly hard to overdose on it so my doctor and I agreed it was safe to go up. The average adult on Diamox takes anywhere from .25-1g/day depending on what they take it for. 3g is the max recommended dose and my doctor gave me a prescription to go up as far as 4g/day but I stalled out at 3.5g before I found myself so cold it was its own kind of debilitating (I tend to want to curl up and hibernate when I get too cold).
We're kind of at the limit of what can be done with meds now, I think. I'm on 4 different ones, 3 to help with my head and one to help with the side effects (the newest one), though the Diamox is definitely doing most of the heavy lifting. There are a couple surgeries that are a possibility in my future: either getting a stent to help with CFS flow, or a shunt to help drain the fluid out of my head, but while those surgeries have been shown to help with blindness and other vision problems, they don't help with pain very much. When I was researching my condition I'd see so many people on forums saying "I thought I was cured with the surgery but now a few months/6 months/a year later I'm back to being in pain all the time!" Overall I'm ok with not shoving things in my brain if they're not going to help, it's not worth the risk.
The other thing that can help is weight loss, though it took me a while to realize that. My neurologist told me, but he didn't push that hard for it at first and as an overweight woman, I'm used to doctors telling me everything wrong with me is weight related (seriously you can get a papercut it seems and they'll tell you to lose weight). It turns out one of my friends has a sister-in-law who has IIH though and after talking with her I was convinced to give it a try. At first I couldn't tell if the weight loss was doing anything because I was losing weight at the same time I was increasing my meds but eventually I hit the point where I kept losing weight while my meds stayed the same and noticed a difference. I lost 85 lbs at one point (though I've put some of it back on).
I'm not really sure what to do next though. I kind of gave myself an eating disorder getting that much weight off and I'm still fat and my head still bothers me (plus, from what I can read of medical papers - there is not much out there for patients, it's all research papers - people with IIH should aim for 5-10% weight loss and I have more than double that goal). Possibly if I lost more weight my head would hurt less but I don't know how to do that, especially not while also working a job with some longer hours and while on medication that requires me to sleep more.
For a while after I got my diagnosis but before my head was as good as it is now I went down to part time hours at work so I could better take care of myself and I think it really paid off. It helped me figure things out and learn how to cope with my new reality. It let me throw myself into taking care of me. But where I used to work, I was the only IT person so if I wasn't there, nothing got done. I got very good at doing my job in half the usual time which meant when I eventually went back to working full time I was pretty bored.
I got a new job at a bigger company where I could be on a team again and where I got paid better (my previous job was at a non-profit animal shelter so the pay was only so-so). I've been working here since August but the days are longer and the commute is too, I don't really have the time to take care of myself like I had been before and my head's been getting a little worse because of it.
Where I am now is honestly heads and tails better than where I was, even if I'm not back to what I was before all this started. I'm kind of afraid that I'm getting to the point where the doctor is going to tell me this is the best we can do for now. Which, if this is how it'd be for the rest of my life I could even be ok with that. The thing is, whenever I look into it online it seems like people's periods of "remission" are always temporary. Maybe they get a year, maybe they get 10 but it seems like the pain always comes back and there isn't much more medicine can do for them other than help them manage their pain. My friend's sister-in-law got 8 years before she had to go on permanent disability to focus on pain management. I try to tell myself that the people that go into remission and stay there likely aren't going to IIH forums and leaving comments saying "30 years of remission, wahoo!" so maybe there's more hope but mostly I've been trying to resign myself to that future so it's easier to handle if it comes and I can be pleasantly surprised if it doesn't. Also, there's always the hope that there will be a medical breakthrough before I hit that stage.
Anyway, that's what's up with my head, why I wear sunglasses all the time, and why I have headaches in weird places like my cheekbones.