This is all of my business.
So this post isn’t a “why I haven’t been posting” kind of post, it’s kind of just a post that’s come around to its time, in that all the reasons I had in the past for not posting this post kind of don’t matter to me anymore. Well, some of them do, but I’m more prepared to deal with them now than I was before and I guess if you’ve been reading here for any amount of time – okay, not any amount, a long amount – you know the kind of person I am and why I do and don’t post different things. And I didn’t post this for a long time for my own reasons and now I am posting it. As… you can see. And it will probably go a ways toward explaining where I’ve been or not been for the past… long, long time… but it’s not meant as an excuse because I don’t need an excuse or to make an apology, nor am an insinuating you’re waiting for one. I just feel like doing this now, so I’m doing it.
Let’s see, it was about three and a half years ago, I think, right before Penelope’s first birthday. I started feeling really, really dizzy. Like, all the time. I’ve always been kind of prone to fainting and dizzy spells, so initially, no big, but it just went on and on and on, to the point that I was like, “Is this my whole life now?” One day, it got so incredibly bad an unending that I ended up in the emergency room and was admitted to the hospital for a couple of days. I don’t know if I talked about that here, but I did then later mention the diagnosis that came out of it. The hospital neurologist happened to be visiting my room right as this insane blinding pain struck me, and was able to diagnose vestibular migraine. I’m pretty sure I did talk about that, because I wanted any information people had, because even after I left the hospital, I was still locked in horrible vertigo and was really concerned that it was about to be my whole life (spoiler alert!).
So I was dizzy. Sometimes just light headed and sometimes the kind of drunk spins. This is still pretty much true. It was really very terrible at first and it still is kind of terrible, but I’ve mostly adjusted. It’s like being on a boat all the time. For the first year or so, I couldn’t really drive much. Now I can drive, except when I can’t, if that makes sense. I can drive more often than I can’t drive, and I’m very aware of when I can’t be driving, so I don’t. And there were the headaches. Eventually to be known as intractable migraines, because they were… intractable. Nothing worked, at all. So for a couple years, I was seeing my neurologist as frequently as every three weeks, but no longer than three months in between visits. We tried varying kinds of medications to get the vertigo and migraines under control, with varying degrees of success. I spent a lot of time in bed.
Somewhere in here, maybe about two and a half or three years ago, my neurologist suggested I get a spinal tap to check on the pressure of the spinal fluid inside my spine and skull. Intercranial pressure. So I did, and listen, it was as terrible as you might imagine. I’m prone to fainting, but this spinal tap was done lying down assisted by x-ray, so since I was already lying down, I couldn’t faint. I was just stuck there, in a perma-almost-faint, for a really, really long time, because my doctor wanted a lot of fluid drained off. The results, however, were not what he was looking for.
About two years ago now, just before Phil was set to go on a 6 week TDY to Texas, things got kind of worse. The dizziness and headaches, of course, which were just always around by then, but worse. And on top of that, my whole body started to hurt. Like fever aches all the time, you know? It hurt if people touched me and it hurt to just sit. I spent a lot of time in my recliner doing nothing. And seeing my neurologist a lot. CT scans and MRIs repeated (oh yeah, I’d had a bunch of that done previously, too, when I was in the hospital), and my doctor says, “Have we done a spinal tap yet?”
This time, I cried before they even started.
And again, it took nearly an hour to drain off all the fluid and HE DIDN’T EVEN HAVE IT TESTED, JUST DISCARDED.
So the results, again, were not what he was looking for. But I had broken my glasses somewhere in here and finally got around to mentioning to my neuro that the ophthalmologist had said something about my eyes. So he looked in my eyes, too, and he decided that even though my intercranial pressure wasn’t quite what was needed for diagnosis, all my other symptoms – headache, unbearable fatigue, papilledema – lined up enough for him to start treating for a condition called pseudotumor cerebri or idiopathic intercranial hypertension. I’ve linked it there so you can look if you want, but basically it’s like it sounds – high pressure in the skull, caused either by excess production of spinal fluid or poor absorption of spinal fluid or just random high pressure mimics the symptoms of a large tumor. It’s not deadly, it’s just painful, and also causes blindness, so somewhere in here I saw an ophthalmologist again and a neuro ophthalmologist as well, but that was a whole OTHER THING that I can’t even go into because that was a mess.
So here we started trying a whole lot of other medications that had a whole lot of unpleasant side effects in an effort to get the pressure down. I was on and off Topamax several times, on and off hormonal birth control, on and off Diamox and Lasix and Verapamil. So many things. There was a long, color-coded chart pinned up in our kitchen so Phil could help sort out what medications I had to take when and what kinds of medications I could take with other medications, because mostly all I did was sleep. An entire year or two went by in here where I spent almost all of my time in bed, either laying very still or sleeping as much as possible. Not surprisingly, this is where I picked up watching Korean dramas.
And then we got orders to New Mexico. I talked a bit about what an enormous clusterfuck that was. Well, right before I left, I saw my neuro in Arizona one last time. I’d just tried Verapamil and HATED it. Now, I have had unpleasant side effects with almost every single medication I’ve tried, but nothing like Verapamil. I would try ANYTHING I’ve already tried again except for Verapamil. So I had to go off it, because hell no. But since I was leaving the state, my neurologist couldn’t put me on anything new because he wouldn’t be able to monitor me. So, we moved to New Mexico – Holloman AFB, specifically – where there is ONE neurologist. The next closest are an hour to an hour and a half away.
It took me several weeks to get the medical group here to process a referral for me. First they couldn’t see me for a month, then someone told me I should be able to get a referral without being seen in my situation, and like everything else ever medical and military, THAT took forever, too. When I finally DID get an appointment, it was still two months away, and that was the absolute soonest they could fit me in. So I stayed in bed and I slept a lot.
Anyway, time went by and I finally did get to see the doctor. It’s impossible to get in with him because he can only see a few patients a day because he spends FOREVER with every patient. By the time I saw him, I was a huge, huge wreck. Just sick and in pain and miserable. He went over all my records from the other doctor and the borderline results of my spinal taps, etc, and said he just didn’t see the same diagnosis. What he wanted to do, see, was a spinal tap. So they scheduled me for that for a month or so later and then, while they had the calendar open, scheduled me for the next available followup appointment as well – in June of 2015. It was about September of 2014 at this point, and he hadn’t even DONE anything yet, so I’m sure you can understand my distress, or nod along and pretend you do.
I have a second Twitter account where I prefer to keep medical stuff and general whining and I had only used it very occasionally to that point, but holy shit, did I rage and go back and forth over this spinal tap. I’ll do it. I won’t do it. This is stupid. Why can’t he just use the results I already have? Why does he need to look for himself? This is insane. And my previous spinal taps had been done in a hospital, with X-ray assistance. This doctor was just going to do this, right in the middle of his regular office. I know now that that’s common, but my first two TERRIBLE EXPERIENCES had been much more reassuringly hospitally.
Eventually, I did get the next spinal tap. Not before I quit all my medications in a rage and took to my bed for another month. These couple-few years here aren’t sketchy because I’m trying to be brief – ha! as if! – but because I mostly don’t remember them very well. Although I talk about sleeping a lot and a lot of pain and other discomfort, I really kept a fairly good attitude up until around this point. I got pretty good at aggressive bright siding and all of that. When this doctor suggested he thought the diagnosis was wrong, it kept me going a few months longer. Ok, NOW we’ll fix it because NOW we’ll know what’s wrong, right?
So the spinal tap. Terrible. So terrible. But probably the least terrible of the three I’d had. So the doctor got on my good side there. He also had the fluid he drained off tested, which put him more on my good side, because I didn’t end up feeling a quart low for nothing. But the results. Guess what. INCONCLUSIVE. He seemed fairly certain he was going to take his own poke at my spine and know one way or the other what we were dealing with, but no. Eventually, though, he, too, decided to go ahead and treat the pressure that he wasn’t sure was so elevated, but seemed like the best idea at the time.
FROM INSIDE MY SPINE.
So I started taking this blood pressure medicine called Atenolol. This was about last November, I think. For the first time in years I was down to like, a single pill or two at night instead of a giant ziploc of various prescriptions. I went with what he suggested, because why the fuck not. At first, when I saw him, he and his assistant seemed to think I was attached to the pseudotumor cerebri (PTC) diagnosis. Like I came in there saying, “this is what I have and I need you to treat it,” and that’s why I came out of my first appointment with such a negative impression. Well, that and the fact that he ordered another spinal tap. But eventually we saw eye to eye – I don’t care if he never gave me a diagnosis of any sort. Did not care, still do not care. Find a treatment and name the condition boobafalooba. Don’t give a shit. If you think you can fix it, I don’t care what it is.
Once we saw eye to eye there, I was totally comfortable just giving the new prescription a shot, because what else did I have going on? So I took it and within two weeks? Maybe three? I felt notably better. The headache would fade in and out through the day. Then there were days where I only had a headache when I woke up or stood up too fast. I stopped screaming every time I sneezed. Then, without even really noticing it, I didn’t have a headache at all. I lost track of my bag of various painkillers because months went by without touching it. Anyway. Feeling good. I started meeting people and joining things and taking my kid places and generally participating in my own life. That June 2015 followup appointment rolled around and I pretty much skipped into my appointment. “HELLO! I AM AWESOME! THANK YOU! SEE YOU IN A YEAR!” And I took my little appointment card for a June 2016 appointment.
Something weird about my first neurologist – he never once suggested I lose weight, even when he suspected a PTC diagnosis and even treated for it. I don’t know if he was afraid to suggest it or thought it wasn’t an issue or thought I’d flip out or what, but while PTC isn’t always weight related, studies have clearly shown that losing as little as 6% of your body weight can actually go a long way toward resolving it completely in those cases that are weight related. My new neuro didn’t hesitate to suggest it, totally matter of factly, like you want a doctor to do if they’re going to discuss your weight. Look, if this IS PTC, if you lose weight, you’ll very likely get better.
Well, after 6 or 7 or so months of not feeling like garbage and not laying around like a sack of garbage, I stopped eating like garbage, too. I started a keto diet, and you can look that up and maybe I’ll talk more about it some other time, and by the time I went to that June appointment, I was something like 20 lbs down. As of today, I’m 35 lbs down. That’s more than 6% of my body weight, just so you know. I was feeling better, doing better, and figured I could take advantage of that and knock this shit out once and for all right? It’s been going well, no signs of weight loss slowing or anything, and I carry on.
Which is why it was so surprising, in July, when crazy vertigo set in. And then a few days later, my whole body started to hurt. And then came the headache. Just blinding headache. I felt a comical level of betrayal. I’d had an untreatable headache every single day for years, but this was somehow just such a shock. I was so bewildered. I don’t even know how to put it into words. It was surreal, because it couldn’t be happening, but it was.
My pills always came in this blister packaging, but my most recent refill had come loose in a bottle instead. I latched on to that as the only reasonable explanation for what was happening. A new kind of headache had developed as well, one I later came to find out is called an ice pick headache, where you just suddenly get stabbed in one spot in your head for a really short time, but you’re definitely certain the whole time that an aneurysm has burst and you’re definitely going to die, and then it’s just as suddenly over and you’re not dead after all. So this made me firmly convinced I was being poisoned by a mistake in my pills, because WHAT ELSE COULD IT BE? I called the pharmacy two or three times to follow up on it, but it wasn’t the pills. They were exactly the same, just in a different package. So, just a month after I’d been in my neuro’s office telling them how awesome everything is, I had to call back to make an appointment to be seen as soon as possible.
Of course, I needed my referral updated, and that involves military healthcare, soooo that ended up being last Thursday.
My doctor and his assistant, who I now really like and trust, were with me for almost an hour, I think. We went over everything that had been happening, and a couple things I listed made my doctor finally pretty certain that we’re dealing with PTC for sure. We’ve been kind of operating under that assumption for years now, but with different test results and different doctors saying different things, it’s always been kind of an unconfirmed hunch rather than a firm diagnosis. The fact that I have a really hard time staying awake seemed to seal it for him. He said, “Yep, that’s PTC.” But on top of that, now rather than trying to decide whether we’re dealing with PTC OR a different type of migraine condition, he’s decided we’re dealing with both. Migraines, common. PTC, not so much. Not unheard of, but I feel a great sense of injustice considering I still do firmly consider myself to be the most average person on earth, which should excuse me from all uncommon conditions, just as a matter of odds.
So they gave me a new abortive headache medicine to try, Relpax. It’s decent. I got a prescription after trying a couple samples. And I’m on a course of steroids to try to break the month long+ headache I’ve been dealing with. They’re eating away at it, but let me tell you, they are not being as kind to my ability to stick to my diet. I have to go to the ophthalmologist again, of course, to make sure I’m still not going blind. Did I follow that up before? Not going blind yet, as of last tests, but because of the pressure, I have to keep getting checked.
I was so offended, though, still. Because I’ve lost so much weight. The doctor even said I am doing so well and I’m still going. And I was LEAD TO BELIEVE that even 6% of my body weight would DO SOMETHING. I’m due MULTIPLE SOMETHINGS. I want a refund. I want a refund, and I want a potato. He said well, no, unfortunately, there’s no magic number where you’ll see a result (THERE IS. I READ IT. IT’s 6%.), and double unfortunately, some cases of PTC aren’t weight related at all, so even getting down to a totally ideal weight might not resolve the condition. I want two potatoes.
Sitting there and talking to them, I was reminded of the first time my Arizona neurologist decided to treat for PTC. I asked him, “It can be fixed, though, right?” And he said, “… (PRACTICALLY AUDIBLE DOT DOT DOT) it can be managed.” And after 8 months of feeling like there wasn’t a single thing wrong with me and it was totally fixed, I was right back there. Not fixed, only managed. And now it needs to be re-managed. And maybe it will need to be re-managed and re-re-managed and re-re-re-managed over and over forever. And that suddenly seems like a long time.
When this all started, it was really easy to keep trying stuff and doing whatever because of course it was going to be fixed with the next thing we tried or maybe the one after that. It took me literal years to fall into a pretty deep mope over how limited life had gotten. You’d think this time, after feeling so great for so long, it would take even longer to get all hopeless again, but it was much, much faster. I’ve been having a real good sulk now for weeks. It doesn’t help that I’ve developed a cold, and sneezing is the absolute worst thing to happen to me all day, aside from waking up. Waking up is awful.
But anyway, here we go again with trying to figure out a way to get back on track, and guess how it starts?
With a spinal tap!