Of the head and the heart

I've debated for awhile where to draw the line between issues related to the vestibular schwannoma and what may be other medical concerns, and what should go into the blog. With my most recent bout of issues, it's kind of impossible to say (yet) what caused what and what is and isn't related. When your brain gets messed with, you can never know what the possible outcomes will be. Brains are tricky things like that. So, I've decided this counts as stuff to go in the blog. Who knows, maybe some other vestibular schwannoma patient has similar problems. Either way, it saves me from telling the story over again at least once or twice.

Recently I've been going through tests to check out what seems to be a dysautonomia. Dysautonomia is "is a broad term that describes any disease or malfunction of the autonomic nervous system." I'm sure I've included bits about this in a recent post or two. I can't remember how much I've already typed out and honestly can't be bothered to go back and re-read my own posts to find out. I've gone through the story of every time I've ever felt bad so many times with so many doctors and interested friends and family members, that it's hard to know who I told (or where I typed) what. So forgive me if this is old news.
I'll start from the beginning. Or what I consider the beginning. This is what I've been able to put together, looking back, of things that might be related.

Since being little, I never felt particularly good in the morning. I remember feeling sick to my stomach and not liking to eat breakfast when I was school aged. Sometimes I'd have little minor dizzy spells when I stood up, but being a relatively small person with pretty decent blood pressure, I figure it was mostly a normal result of  dehydration or whatever, vs some medical issue.
As a teenager my whole GI system decided to turn evil. I had lots of stomach cramps and general unpleasantness, but the GI doctor was never able to find anything wrong so I was told it was IBS. I just decided to get used to abdominal pain and never really sought treatment. I just have a crumby stomach, that's just how it is.
When I went away to college I got terrible migraine headaches. Very typical with their bad reaction to light and sound and whatnot. Once I paid for the expensive pills the doctor ordered, I didn't get them anymore. Go figure.
In summer 2004 I randomly passed out during a lecture class. The medics came and checked me and everything looked okay, so I refused to go to the ER and went back to class. I wonder now if I had gone to the ER like I should have, if they would have found the tumor then. Oh well.
When I was pregnant with my kids I had "morning sickness" the whole way through with both of them. I would get dizzy spells where I would start to feel hot and nauseated and dizzy and just had to kind of squat down in front of the toilet until it went away. I figured that's just how it is when you're pregnant.
Is any of that related to dysautonomia and/or brain tumor? I don't know. But it's stuff I've thought about as I've been reading and learning more about these conditions, and as doctor after doctor goes through my medical history.

May 2009 I realized I was getting a good number of headaches again, not like the migraines I'd had, just regular headaches, but a lot of them. I figured I needed my eyes checked, and went to the eye doctor, but my glasses checked out okay, so I chalked the headaches up to stress and went on with the Tylenol and coca-cola plan. Which of course didn't work out so well. August 2009 was the ER trip where they found Gary the brain tumor, and Sept 2009 he was evicted.
Around three weeks post-op I got a headache, and that headache didn't leave for a full year. The surgeons said it was normal and to take motrin and tylenol and it would go away, but it didn't. So after a full year of headache I went to neurology and they started me on nortriptyline. After a month of crushing exhaustion and terrible dry mouth, known side effects of nortriptyline, I started to feel more relief from the headache than side effects and thought I was cured. But after a couple months of feeling good "the headache" came back.

Christmas 2010, I got gastroenteritis. I was dehydrated, of course, so the whole time I was in the ER my heart rate was in the 120s-130s. It seemed more concerning to me than to anyone else. I was told it would go back to my normal 80s-90s when I was feeling better. It took a good month or month and a half, but slowly my heart rate seemed more in the normal range. I would notice spikes into the tachycardia range, but mostly while I was at work, so I figured it was stress and not to bother worrying about it (notice a trend? I never learn my lesson).

Sometime in winter 2011, since "the headache" was back, I went back to neurology, and they increased my nortriptyline dose. I repeated the same cycle of side effect month, feeling better, then crash. Only this time, during the side effect month, I had a day where I got bad palpitations and felt run-down and generally awful. I took my pulse and it was 150 after all of the exertion of walking 10 feet from my chair to the fridge. The side of the nortriptyline bottle says something to the effect of "flip out and cry and assume you're dying if you experience fast or unusual heart rate". So I did. And then I took a nap and went to work. The next day I developed flu-like symptoms, so I figured the illness probably explained the high heart rate, rather than being caused by the drug. But after that I still went on having those heart rate spikes, sometimes with chest pain or pressure or just general discomfort. I didn't keep track of how frequently this was occurring, but it must have been a decent bit, because I know one time when I mentioned it to one of my coworkers she said, "oh, but you've been having that for awhile."

In spring 2011, during my couple months of feeling better from the nortriptyline, I really felt good. I started exercising somewhat routinely, and taking the nine flights of stairs up and down at work instead of the elevators. I lost something like 12 pounds, which at the time I thought was all due to my amazing work ethic, but in hindsight was a lot of weight for a smallish person to loose in 3 months, with not a whole lot of consistent effort or major change in diet.
Then June/July 2011 came and I just couldn't get myself to exercise anymore. I was soooo tired. I was getting bouts of nausea and these weird dizzy spells where it felt like when I get up to fast and my head spins, but it would happen while walking around, over and over again like little lightning bolts. And of course, "the headache" came back. All these things (fatigue, nausea, headache) made me think scary brain thoughts, so back to neurology I went.
In my routine check-in vitals, my pulse was 132. The tech was concerned. I told her "it's okay, I'm just like that sometimes". But Dr D didn't think it was okay. She laid me down and took my pulse and blood pressure, then stood me up and repeated it, and found a significant difference. She mentioned something called POTS, Postural Orthostatic Tachycardia, and sent me to my GP.

By the time I saw my GP in early August I was dragging. Just getting out of a chair felt like a major effort. I was struggling to push open doors at work like they weighed a million pounds. My head throbbed, and my heart raced. Just like when I was pregnant, when I got up in the mornings I got hot and nauseated and dizzy and had to squat down to keep from feeling like I would pass out. But this time I was definitely not pregnant. Dr N, one of my two general practitioners, drew labs. They were all normal. She started me on a new drug called Fludrocortisone, which is used in the treatment of POTS to help people hold onto salt, which in turn helps keep blood volume up. Back to neuro I went, but before I could get to my appointment I had that ER visit where I went completely manic and walked out, then had to drug myself with benadryl and Valerian root tea to sleep it off. After that my fludrocortisone dose was cut in half, suspecting that may be what made me crazy.

Neuro went back to checking my head, but my MRI and CT were okay. I kept track of headaches, heart rate, and other symptoms myself, and found that going from laying to standing consistently made my pulse jump up and made me dizzy and sick feeling. I still felt like my head was the issue, though, not the heart. I had pretty much thought it was normal to get a little dizzy and sick when getting out of bed, just like my 'normal' consists of routine bouts of upset stomach. I just wanted to not have a headache anymore. Still, Dr D thought the heart and the head issues were connected and didn't want to mess with meds too much until we got the little tachycardia issue figured out. She increased my nortriptyline again and started me on a low dose of propranolol, a beta blocker that can be used both for chronic headache and POTS, reinforced the instructions to increase water and salt, and sent me to cardiology.

Here's where the story is probably new and not just a re-hashing of old details (sorry).
Cardiology did a 12 lead EKG, which was fine. Then they tried doing one as I went from laying to standing, and watched my pulse go from 80s to as high as 145, while I got dizzy and wobbled. They didn't seemed convinced about the POTS thing, but seemed to think there was something going on, and ordered a battery of tests to check things out. I did a 24 hour holter monitor which prints a continuous EKG strip, a two week 'event monitor' which has a little phone thingy where you can dial in your symptoms and it's supposed to see what's going on with your heart at those times, a transthoracic echo, and some more labs. It was pretty much a full month of testing. My skin started to break down from having to wear the sticky leads so much.

Throughout the tests I was happy that my heart seemed to be 'performing'. You know when you feel sick, but when you go to the doctor suddenly all your symptoms are gone? I was worried that might be the case through the tests. But during my two weeks on the event monitor I had a ton of palpitations, chest pain, shortness of breath, and nausea. Every time I checked my own pulse it was in the 110s-140s if I was doing anything short of laying down still and flat, and this was on the beta blocker. I was thinking "yes! We got some good evidence of what's going on and they will be able to fix me!" Even though I didn't think there was a heart issue at first, the doctors were starting to make me feel like there was something there that they could fix. Maybe it wasn't "just how I am".

But, when I went back to cardiology she said the tests were okay. According to the echo there were no structural problems with my heart, according to the event monitor I didn't have any significant arrythmyia, and according to the holter I had normal "diurnal variation". I was confused. Didn't it matter that that I was tachycardic so much from so little activity, and that I had dialed in about 50 million "events" on the event recorder? Apparently, since the average of my heart rate over the entire 24 hours was halfway decent (I didn't get the exact number), it didn't matter. The next step was to order more labs, do a new test called a tilt table test, and go back to neuro about the headaches.

Back to Dr N in neurology at the beginning of October. My headaches had still been coming everyday, but in general weren't lasting as long. It's hard to describe the headaches at appointments since when I'm not having one I feel like all is well, I look happy and pleasant enough and don't seem in particular distress. But when I do have one it's ridiculous and all I can think about. It's hard to focus and make myself do anything beyond what's absolutely necessary. I was/am still taking motrin twice a week and imitrex twice a week (2 tabs each time). The only reason it's not more is because that's all I'm allowed to take. Dr D didn't want to rule out the possibility of POTS, or some sort of dysautonomia, and ordered me for some additional 'autonomic testing' that's done in the neurology clinic. In the meantime, she increased the dose of my propranolol to 30mg twice a day, with the instruction that I can go up to 40mg if I want, but to try out the 30 first and let her know if I want to increase the dose.

Then I had the tilt table test.
Oh man.
After just reading about it, I was already scared. It sounded horrible and barbaric. But I figured, it's a legitimate medical test, so it'll be okay.
But I was wrong. It was pretty much torture. Basically, the point of the test is to try to get the patient to pass out. If you pass out, you get a positive test. If you don't, you get a negative test.
First, I had to be without anything to eat or drink from the night before. Which made me sick already to start with. Then started an IV and ran some IV fluids, and put all kinds of monitors for heart rate and blood pressure on, including those shock paddle sticker things just in case they had to restart my heart. I got strapped down to a bed with my feet on the foot board, and then they tilted the bed up so I was essentially standing upright on the foot board. Then I just had to stand there, still and quiet, and the nurse would ask from time to time how I felt. I was a little lightheaded, a little nauseated. I hoped my heart would do its thing and show them what's been happening to me when I get out of bed. But apparently it didn't. It stayed nice and calm in the 90s, with a lowish but stable blood pressure, as if there'd never been anything wrong with it in the first place. And of course, as bad as I might have wanted to, and even thought I might for a second, I didn't pass out.
The next part of the test was the worst. If you've made it the 40 minutes or so without passing out, you get a drug called isoproterenol in your IV. Isoproterenol is basically adrenaline. The point is to speed your heart rate, just to see what happens, for shits and giggles (okay, well I guess it's for legitimate medical purpose, but I'm still bitter). My heart rate shot up to 160, and was beating so hard I thought it might explode. I started panting, trying to catch my breath. The nurse asked how I felt, and all I could get out was "yucky". I was hot and nauseated, but couldn't throw up as much as I felt like I needed to. It felt exactly like when I have an 'episode' at home and have to squat down until it passes, except I was strapped to a bed so I couldn't do anything but freak out. I wanted to pass out so bad. I wanted it to be over. But even though the sides of my vision started to dim and I heard loud hissing in my ears, I didn't pass out. I can't even describe how terrible I felt. I told the nurse I couldn't do it anymore, I had to lay down, and she put the bed back flat and put cool cloths on my head.
They let my mom come in, and she said I looked really pale, even though I was already starting to feel better by then. I wonder how terrible I looked standing up. I figured since I couldn't even finish the test, I must have 'failed' it. After all, how could someone that much like they were going to die and still pass? I told them that it felt exactly like one of my morning 'episodes'. I thought maybe it would be significant. But the doctor came in and told me I passed. The test was negative. They didn't find anything wrong with me. He said cardiology would have to follow up with me, that maybe I would need a longer monitoring period or something. He also said all of it could be related to the brain surgery, even though they didn't find any condition yet. And then my head started to ache.

At that point, I was just done. I sat in the recovery bed and ate a sandwich and cried. That was Thursday afternoon. Now it's Sunday and I'm still teary over it. I don't know exactly why. I guess I just hate how a normal 20something year old's life has turned into years of constant pain and tests and doctors and medication. All I want is for my head to stop hurting. I'm angry at the doctors for taking what I thought was "just how I am" (dizzy when I get up in the morning) and turned it into a big ordeal with traumatic tests, with the idea that if they can just find out what it is, they can fix it. I'll say it again, all I want is for my head to stop hurting. I want the nightmare to be over.

I've read on some dysautonomia forums of people with POTS who passed tilt table tests on one of their "good days", and then did it again and failed. There's no way I'm doing it again. I refuse. I literally woke up with nightmares over it the night after.
I still think the meds, and probably the doctor merry-go-round, are doing as much harm as good. I'm wondering if I would have still passed the tilt table test if I wasn't on the beta blocker. I wonder if I would even be tachycardic if I weren't on the nortriptyline. After the tilt table test, in a day and a half of anger and defiance, I decided not to take my meds, and ended up with a skull crushing headache. My plan was to "just be okay." Like I could will myself to not hurt anymore. But I couldn't even make it two whole days.

I need to figure out a plan. I want to have the energy and ability to both work and take care of my family when I'm home, instead of just one or the other. And to do it without whining would be great. To do it without whining and without meds would be even better.

Step one, which I'm starting this week, is to switch to day shift. I'll still be working the night shift every 3rd week, but I think putting my body on a proper schedule for most of the time will help. If my body is having trouble regulating itself, I think a regular eating, sleeping, and medication schedule just makes sense.
I also want to get back to exercising. Between the nortriptyline sugar cravings and the fludrocortisone water retention I've managed to gain back over half of the weight I'd lost over the summer, and I know I've lost strength and endurance. The cardiologist said to exercise, but wasn't really specific on what to do, so I was left wondering what it was she wanted from me. The whole reason I stopped exercising in the first place was because my racing heart made me so tired, the reason I was sent to her. But Dr D told me about some research that shows that cardiac rehab type exercise helps POTS patients. I'm supposed to start with calm, seated exercises and slowly work up to more regular stuff. That made sense.

Lastly, I need to get this doctor thing figured out. There's too much round and around and I'm tired of explaining myself over and over and still feeling like I'm getting nowhere. Half the time I feel like they think I'm lying. There's an alternative medicine clinic at the hospital down the street from my house. I'm going to try to get in with them. I think if anyone's going to help me feel better and get off these terrible meds that kind of practitioner would be the one.

I never got a call from neurosurgery for this year's appointment, so I guess I need to find [another] new one of those, too.

I think that pretty much has the saga up-to-date until the next set of tests. I think eventually I'll reach the point where there aren't anymore to be had.

Two years post-op

As of yesterday I officially made it to two years post-op. Which of course I figured I would. With a vestibular schwannoma if you make it to one year post-op you'll probably make it to two and three and so on until which point you reach some non-vestibular schwannoma related death. Which I don't mean to be morbid, it's just true.

Anyway, it's been over 5 years since I had an appendectomy and I don't celebrate that. I couldn't even tell you for sure which month it was when I had it, I just know sometime in summer '06. But September 22, 2009 isn't going anywhere. Apparently brain surgery isn't the same as an appendectomy. After the appy, I only took one motrin, and that was only because the nurse made me because it was supposed to hurt. Now, two full years post craniotomy, and I have to ration out my weeks doses of motrin and tylenol and imitrex.

Vestibular schwannoma / acoustic neuroma (whichever you prefer) surgery seems to turn people upside down, at least to some extent for everyone I've read about. I remember before surgery, people telling me "oh I know so-and-so and her relative's friend's cousin had the same thing and she's just fine now." I wonder if "just fine" is really accurate or just an outsider's perception. Because certainly things can look just fine without being so.

I'm not saying every single person who's had craniotomy for an AN has had major negative outcomes. There are plenty who do well. I just don't happen to be one of them. And I don't think it would benefit the people who e-mail me questions while they're going through their own experience, to pretend like I am. I'm one of the unlucky ones with chronic headaches, facial paralysis, single-sided deafness, etc. Not the unluckiest, I did wake up after the 10 hour ordeal, but not the best off I've read about. Not a day goes by that I don't think about it, and many days I still wonder if I would have been better off having never had surgery at all.

So at this point, I'd still say things are "just okay", same as I did this time last year. Chronic headaches continue to be a daily or near daily occurrence. Right now I'm on nortriptyline 75mg once a day and propranolol 20mg twice a day to try to help prevent them, and motrin and imitrex to help stop a headache that's started. The 'as needed' meds are still tough to figure out when to take. As I said I can only have so many a week, so I have to try to figure out each day if it will be a bad one worthy of a pill, or if I can tough it out and save the meds for another day. I hate having to take a bunch of medicine, but that's how it is.

Since my ER visit last month, I've had another horrific one where I almost went back to the ER. This headache was honestly the worst I'd ever had, a true 10 out of 10 pain. I was up rocking and crying and at one point vomited from the pain. I really thought I was going to die. It was much worse than being in labor. I called the neurologist on call at the hospital and he said to take another imitrex and a zofran (thank goodness I still have some left from after surgery!) and to lay flat. He said since I'd had a recent MRI that looked fine I should just stay home rather than try to make it to the ER. Thankfully, that headache hasn't returned, just the common 5-7 out of 10 type. Sometimes for as many as 12+ hours out of the day.

My face hasn't really improved since last year. In fact, I think it's gotten a little worse. I'm not sure if it's because of the tarsorrhaphy or because this time last year I had just gotten botox or if it's just the same and I think it's worse. Anyway, some people had requested updated pictures so here you go.

Please excuse the cracked corner of my lip and the fact that I'm sitting on the kitchen floor. I had done some pictures standing in the kitchen with glasses off, but I can't stand still for very long without getting dizzy, so floor it was. Also, blogger is going crazy with my trying to drag the pictures around to have them next to each other, so sorry about that, too.

I always wear my glasses, but I took pictures without them because I thought it might be easier to see my crazy eye in the pics without them.

And then lastly, some eye pictures. The November 2010 picture post of my nasty tarsorrhaphy eye gets a lot of hits for some reason. Before I had the tarsorrhaphy done I had searched for pictures of the post-op results and couldn't find many, so I'm going with the assumption that that is what others are doing, rather than looking for pictures of odd eye surgeries just for fun. So, just in case it might help, here's the evil left eye. It's 23 months post gold-weight and 10 months post tarsorrhaphy.

Really, despite being not the right shape and size, it's doing pretty well. Sometimes the weight feels heavy and kind of aches on the inside of my eyelid, and sometimes the tarsorrhaphy corner aches, and sometimes it just feels irritated in general, but I haven't had any more eyelashes growing inside, and as of the last time I saw Dr L everything looked good. No more dellens. Dry but not tooo dry. I still just use refresh PM ointment when I'm going to sleep and Refresh Celluvisc drops in the day, usually only once or twice. At work I use more, but it's really dry air there so it makes sense. I'm tempted to try a lighter-weight eye drop and see if it's good enough, but don't want to risk any of that terrible burning pain that my eye gets when dry (think like when you get an eyelash stuck in your eye - it feels like that). Dr L said the only reason they'd take the weight out is if it started to poke out on it's own. I was afraid it would have to be replaced after so many years, but he said it doesn't. I'm assuming this is the most facial recovery I'll probably have, so it seems likely that the gold weight and tarsorrhaphy will be permanent. Lame, but at least it means no more eye surgeries. I'd need so much ativan for anyone to come near my eye with a scalpel again.
Side note - My pupil is really that huge most of the time. It's always been big, but I think it's bigger post brsin surgery. I've even had a doctor do one of those exams where they usually have to dilate your pupils, but without the dilating drops.

I've had people that I've met within the last two years tell me that they didn't even know there was something wrong with my face without me telling them. I don't know quite how to feel about that. On one side, if they're telling the truth (which, honestly, to me seems unlikely, but maybe) then that's kind of cool. On the other side, I still feel like this isn't my 'real face', and I want people to know that there was a better face before this. I used to have a big smile like this:

I guess it's pretty good luck that I got married young, before all this. Not just because I got to have my 'good face' for my wedding pictures (though I do think about that), but also because my husband has been such an amazing support. I should have had more pictures taken. Oh well.

A friend from the ANA forum had asked me a question that I haven't responded to yet, partially because I'm a bad responder and partially because I've been thinking about my answer. Anyway, this friend also has facial paralysis and has been reluctant to go out much, and asked if I had any tips. In case that might also be a question on someone else's mind, I figure I'll respond here.
Basically, my tip is just try. Going out and being around people might be tough for awhile. I'm two years out and still pretty self conscious. But I don't really give myself a lot of a choice. I have to go to work, I have to go to the store, I have to take the kids places. It helps to have rad friends. If they're good friends like mine, they won't miss a beat and you'll have a great time even if you are self-conscious. The first non-doctor place I went to post-op was my friend Kate's birthday party. And even though I kind of had a zombie face and there was saran wrap stuck to my eye, no one really seemed to care.

I understand that not everyone has friends like that, but I promise it won't be as bad as you think. Little kids may stare, but luckily now it's not so much in horror as it is in curiosity. And that's okay, because I like to look at weird people, too.

One thing I do try to avoid is pictures. At first I was against them unless they were for 'documentation' purposes, then I tried to be okay with them, and now I've decided I just hate them. People take repeated shots as if they're going to get a good one, and it never happens. Because it's not possible. So as much as possible I try to just avoid it, as long as I won't offend anyone by sitting it out.

So besides being obnoxious and maybe changing a few small things, facial issues aren't too big of a deal when out. (Those small things? Well, you probably won't be doing shots at the bar anymore, at least not without a straw.. and don't forget eye drops, though at first you might be self-conscious about putting them in around friends, I figure if they're creeped out by eye stuff then too bad.. and food will get all over your lips while eating since they can't move out of the way, so always have a napkin around.) The things that are bothersome, are single-sided deafness and headaches. Not hearing out of both ears is crappier than I thought it would be. The constant hiss in the left ear is annoying. I got to go see a couple of bands this year, for the first time in awhile, and it just wasn't as enjoyable with only the one ear listening. I mean, it was still fun, but noticeably different. I can't hear conversations a lot, especially in noisy places. It's like before one ear must have listened to the background noise and the other must have listened to the conversation, and now right ear is trying to do both, and failing. I try to position myself so I'm on the outside of a table of people or line of people walking, but sometimes it's tough to do without looking crazy or weird. My friend Liz is the best and remembers better than I do which side she needs to be on so I can hear her. (Not that long ago I picked up the phone and said "hello?" and didn't hear anything, so I switched ears and tried it again because I truely wasn't sure which ear couldn't hear. Whoever it was never answered, so it was tricky. Then I laughed at myself. Good story.) Anyway, it makes being in public places not that fun, so sometimes I do avoid activities just because I know I won't be able to hear anyway. If I am out, I tell everyone upfront about my deaf ear, even if it's really none of their business, because I don't want them to think I'm rude when I totally ignore them.

Headaches have caused me to flake out more than I like. I've figured out that movement and talking both make my headaches worse, so you can see why that might be a bit of a problem. Even non-brain-tumor people cancel plans for headaches. It's just not something you can do all the time, even if you have a headache all the time.

So, in the end, I guess "just try" really is my only piece of advice. Sometimes you have to push through things. You already fought a brain tumor, so you shouldn't have to fight for your right to party, right? Or something like that.

At this point, two years post op, my biggest issues don't actually seem to be AN related. My MRI checked out clean again. But.. I'm still dizzy or lightheaded frequently. I still get nauseated. My head still kills me. I'm still exhausted. I still get confused. (The other day, driving to the store, I couldn't figure out if it was 2011 or 2012. I knew it was one of the two but honestly didn't know which one.) I still get overwhelmed in big crowds or overly-simulating places, like the new giant Toys'R'us near us. I'm okay in familiar places like Target, though. My depth perception isn't the best, so I'm not a big fan of driving, especially our bigger car. Or in the dark or rain or to somewhere unfamiliar. It doesn't keep me from getting to places I need to be, but I'm sure there are times when I decide not to go somewhere optional because of the drive or parking (haven't tried parallel parking yet).

Most of my issues actually seem to be cardiac in nature. Why the most vital organs have to be the ones with issues, I don't know. I expect my lungs to act up next.
I may have said before that neurology referred me to cardiology to evaluate for possible Postural Orthostatic Tachycardia Syndrome. They did an EKG and did watch my pulse make as big of a jump as from 90s-140 while going from laying to standing, and that wasn't even at my worst time (the morning). They ordered a number of tests and I see them again next week for results. I had labs drawn, a cardiac echo, a 24-hour holter monitor (continuous monitor strip), and a 2 week cardiac event monitor. On the event monitor I had a little cell phone looking thing on which I could note my symptoms when I had them and my level of activity. I dialed in a lot of 'events'. Enough that I was worried the company would call me and tell me to please stop abusing the monitor privledges.
Lately I've felt that my pulse has been fast more often that not. When it's fast I feel tired and dizzy and short of breath. When it's regular it feels like it beats really hard and I can feel my pulse in weird waves down my arms, and I get nauseated. It's really weird. And I'm very obsessed with it. My heart even starts racing in my dreams, and sometimes it wakes me up. The other day I stopped what I was doing in my dream to check my pulse.. still in my dream.

I'm still taking fludrocortisone 0.05mg once a day to help increase my blood fluid volume or something like that. I'm supposed to increase my sodium and water intakes but I'm not crazy about either, so I drink Gatorate, which kind of has both. No more Coke for me, though, as the caffeine makes my heart even crazier. And what's the point of Coke with no caffeine?

Luckily, I've been able to keep up at work, and have within the last 6 months even started running charge nurse duty for my unit once or twice a week or so. The downside is, I put in so much energy at work that I'm completely drained at home. I pretty much do next to nothing around the house, and am still tired. I've requested to switch to day shift and should be on largely days come November. I think that will be a big help. As it is now, it's very difficult to take my medication on a standard schedule. I also feel like if my body is having trouble moderating my heart rate, perhaps I should help it out by at least sleeping at the same hour each night. It only makes sense. And I figure, I should probably move to days now while we have time to ease into it rather than wait for a doctor to say "you must do it now".

I guess my goal for the next year is to figure out what's wrong with me and to try to tackle this headache issue. Doing those things with fewer medications and much less whining would be awesome, too.

The Deal with Dresses

I don't own a pair of jeans anymore. I used to have a lot of them. And lots of tee shirts. And lots of 'regular young person' clothes.

Then I spent a good three plus weeks in just pajamas. After surgery, my right hip hurt from laying on it so long, and I couldn't imagine wearing a jeans waist-band on that irritated skin. Plus, most of the first month post-op was spent either in a hospital bed or sitting in a recliner at my parent's house, so there was no need for real clothes. Pajamas are lazy and comfortable.

I can't really remember at what point I started the dress thing. By the dress thing, I mean wearing mostly to only dresses (aside from the scrubs I wear to work or the pajamas I wear to bed). I've always owned dresses, but they weren't necessarily the kind of thing I'd wear routinely. Like most people, dresses were for special occasions or times I wanted to look especially nice. Dresses are cool in that they make the wearer feel pretty. Dresses are fancy and swing around and for the most part accentuate the positive more than jeans do (ugh, muffin top).

It's hard to feel pretty with a messed up face. Your face is what most people look at first, and what they see the most of. Faces also communicate a lot. Not just in the words coming out of their mouths but in expressions and imitations. It's hard to explain just how devastating it is to look different and to not have that function of expression. It sounds so superficial. People are like, "hey, it's not that bad, at least you're alive." Which is true enough, but sometimes little consolation. The problem's not so much that the partially paralyzed half of my face makes me look different from other people, as it is that it makes me look different from myself, the me I grew up with and knew. And honestly, I really hate that. It just really really bothers me.

Anyway, about the dresses.
I've had moments in the past where I've thought, "wouldn't it be fun to just wear dresses all the time". Dresses are easy. There's no matching of shirt and pants. They're comfortable, and they're classy. Getting dressed up is fun. But I was never serious about the idea of no pants until after Gary. After Gary, I need a pick-me-up. Clothing affects your self-perception as much it affects the way others perceive you, and a month in pajamas could make anyone feel pretty slobby.
At some point I decided, "I'm not buying pants and shirts anymore". As clothes wore out or didn't fit I just gave or threw them away, and only replaced them with dresses.

At first it was kind of tough. There weren't a ton of casual dresses I liked to be found in stores. But the fun of getting dressed up every morning was worth it. Luckily, this year the stores have had a ton of dresses in all kinds of styles (maybe I'm a trendsetter? haha), and it's been more difficult not to over-buy. As it is now, I have close to 50, and the closet is about to burst.
Now the challenge this season comes in making it through the winter. Last year I resorted to sweatpants or pajama pants a fair bit on colder days. I have to figure out how to make pantyhose a more-than-single-use item.

To certain extent I feel like everyday dresses have become my 'thing'. Maybe most people don't notice, and that's okay, but I feel like there is enough connection between vestibular schwannoma and dresses that I needed to attempt an explaination. My quick answer for those that do ask, "Oh, you look nice today. Are you going somewhere?" is simply, "no, this is just how I dress."
In the end, the deal with dresses is simple. It's about those little pleasures. I like them, they make me feel pretty, and just waking for another day is reason enough to warrant getting dressed up.

August 15th is always the worst

I'm a little teary today. I'm running on very little sleep so I'm probably over-emotional just from that, but it's also August 15th again, so it's the 2 year anniversary of finding Gary the giant vestibular schwannoma.

I wish I could have known then what I know now. All I knew then was there was something in my head that didn't belong and I wanted it out ASAP. I wish I had gotten more opinions, talked to more doctors, and taken more time. They told me recovery was going to be hard, but being a non-cancerous tumor, I figured there would at least be a 'recovery'. But there isn't going to be, so far as I can tell. Instead, things are just different, a new kind of normal. I look different, I think differently, I feel different. I hurt pretty much all the time. I'm tired pretty much all the time. I don't enjoy things the same as I did. Half the time I smile and nod because I don't hear what's going on. In the back of my mind I'm always worrying about eye drops or if I have all the different meds I need on hand or if this headache is one to worry about or not.

I read the posts I wrote before surgery and notice how funny they could be, and how I complained about the other whiny patients I read about at the time. But now I'm one of those whiny people.

I had an MRI today as a follow-up to my ER visit last week. I also went back to neurology. I apologized for just walking out of the ER and explained what the steroids had done and they said it was okay, they understood. They said that can happen with steroids, and also with agitated post-seizure patients. I'm doing well on the 1/2 dose of fludrocortisone, at least as far as not going totally manic. I'm also not having so much of an issue with my heart rate and dizziness. So the steriod and propranolol seem to be controlling those symptoms.
But my head hurts. So. Bad.

Dr D checked out my MRI and consulted with the neuro radiologist, and they said it looks good - the same as last year. Which isn't to say it's "normal", but there's no tumor or regrowth or other major issue. Just the known weirdness from the surgery. I suppose having a hole in my head and a lumpy skull is okay for me.

Guess where the sausage shaped tumor was?

Also, the dead looking area that was crushed by the tumor and/or removed during surgery. That part that I "don't miss".

I wish I knew what I was looking at more. But I'll just have to take their word for it that it's all okay.

At the end of the month I go to cardiology for more workup on the POTS thing. I don't know if they're going to do a holter monitor or a tilt-table test or just tell me I'm fine or what. But Dr D wants whatever is going on with my heart to be okay so we can then see how much my head hurts when my heart isn't racing all the time.

I don't really think that's the issue, though. After doing more reading, I really feel we're going about this all the wrong way. I feel my issues are more mechanical in nature. My head was literally in a vice, with my neck bent at an unnatural angle, for 10 hours, while someone drilled holes in my head. I think that probably has a lot to do with why it hurts. Not a chemical imbalance type thing more typical with other more organic migraine types. But, you know, I'm not a doctor.
The only thing they gave me today to help with the worsening headaches was an increase in my nortriptyline. Even though I've been on it for almost a year now and have had maybe 3 total months of help from it. The imitrex and motrin don't help either, but no one seems to believe that.
Maybe when I'm in appointments I don't look like I'm hurting. Maybe I should be more dishelved, pale, teary. I don't know. I just don't feel believed. But really, I promise I feel really bad. And this long with headaches this bad has me at the end of my rope. It really sucks.

I read this afternoon about something called occipital neuralgia. "Occipital neuralgia, also known as C2 neuralgia, Arnold's neuralgia, is a medical condition characterized by chronic pain in the upper neck, back of the head and behind the eyes. These areas correspond to the locations of the lesser and greater occipital nerves. ... Occipital neuralgia is caused by damage to these nerves. ... The symptom of this condition is chronic headache. The pain is commonly localized in the back of head and around or over the top of the head, sometimes up to the eyebrow or behind the eye. Because chronic headaches are a common symptom for numerous conditions, occipital neuralgia is often misdiagnosed at first, most commonly as tension headache or a migraine leading to treatment failure or addiction. Another symptom is the eyes being sensitive to light, especially when headaches occur."

The headaches I most frequently get are a kind I call the "shot in the head" headaches. They feel like the back of my head has been blown off. Sometimes there's a point in the front of my head, either in the bridge of my nose or middle of my forehead, where it's like a bullet entry point pain (or what I imagine it to be) - more sharp and localized - and then the big intense pain in the back of my head where it's like it's exploded out. And sometimes there's a searing, burning, shooting pain along the top of my head. A lot of times the pain also goes down into my neck and tightens my shoulders. I think this sounds pretty similar to the occipital neuralgia description.

I would love to be off medications. If something's working, then that's fine, I'll take it. But to take a bunch of medicine that doesn't seem to do anything seems stupid. It's a waste of money, waste of medicine, and unnecessary damage to the rest of my body, plus who knows what all side effects. If we can just figure out why I'm hurting, I feel like I can find therapies that can be better directed at curing the problem instead of just masking the pain. I'd feel much more positive about acupuncture, massage, etc. But I feel like I need the doctors to help me find the why first.

Now we're finding all these other possible things wrong with me, but I'm still convinced most of the problem started two years ago with "you have a brain tumor".

Headache logs

Here are 5 typical couple days of headache logs. If I think "what does my head feel like right now?" I could mark an X every hour, but rather than do that I only mark one when the pain is enough to think "I have a headache." Dark gray is when I'm asleep and light gray is at work. On the actual paper charts I write in notes about how I'm feeling otherwise (nauseated, tired, anxious, tight chest, etc), what meds I've taken, and my pulse. This makes it pretty obvious to see my funky sleep schedule.

Time	00	1	2	3	4	5	6	7	8	9	10	11	12	13	14	15	16	17	18	19	20	21	22	23
10
9
8
7																			X
6																		X
5	X																X			X	X	X	X	X
4				X			X
3										X
2
1

Time	00	1	2	3	4	5	6	7	8	9	10	11	12	13	14	15	16	17	18	19	20	21	22	23
10
9
8
7
6
5															X								X
4																			X
3												X								X		X
2
1

Time	00	1	2	3	4	5	6	7	8	9	10	11	12	13	14	15	16	17	18	19	20	21	22	23
10
9
8
7
6	X														X		X	X
5		X																	X	X
4
3						X
2
1

Time	00	1	2	3	4	5	6	7	8	9	10	11	12	13	14	15	16	17	18	19	20	21	22	23
10
9
8
7																					X
6										X	X						X			X		X
5						X	X									X		X	X				X
4
3
2
1

Time	00	1	2	3	4	5	6	7	8	9	10	11	12	13	14	15	16	17	18	19	20	21	22	23
10
9
8
7
6															X
5																							X
4														X			X
3									X										X
2										X
1