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.