Category: Medical Adventures

Yesterday, I wrote about the cerebellar stroke I had ten years ago, when I was 47 years old, caused by a right vertebral artery dissection.

Today I want to talk about the recovery process. It was much longer and much stranger than I expected. And both cerebellar strokes and vertebral artery dissections are rare. There isn’t much out there about recovering from either one, except for big obvious disabilities. So I want to put my own experience out there.

I stayed in the hospital ten days (after being told they’d keep me overnight!) in order to get the right levels of blood thinner in my system. They had me on IV Heparin and were transitioning me to Coumadin. I learned that when you’re on Coumadin, you have to get your blood checked often (for me it was usually once a week), because either too thin or too thick can be life threatening. I was also told not to make sudden changes in the amount of green vegetables I ate, or other Vitamin K-containing foods, because that would change the amount of Coumadin I needed.

In the hospital, they had me walking around now and then. But I was in the telemetry ward hooked up to machines, so that was a production. I was also checked out by a physical therapist, an occupational therapist, and a neurologist and they concluded I didn’t have any permanent disability and didn’t need additional services. So I thought I could bounce back.

But I basically had three things that needed to heal: My cerebellar stroke, my vertebral artery dissection, and my general fitness level. And part of the problem with recovery was I didn’t know which symptom was from which thing or combination of things.

General Fitness Level

I liked to tell people that I didn’t have the stroke because my fitness level was bad, but having the stroke destroyed my fitness level. I was lying around in the hospital for ten days, and that can’t have been good for me.

But come to think of it, I’ve certainly had headaches in the past that lasted more than ten days where I didn’t do much — but was never as wiped out as I was after my stroke. I now suspect that the stroke itself made me woozy, light-headed, and tired when I stood up and walked around. After all, your cerebellum is your center of balance. I think my brain had to make some new connections simply to easily walk around in the world. Sure, I could walk a straight line when the neurologist asked me to, but being up and around for more than an hour or so had me wanting to go straight back to bed.

In my blog post from August 23, a month after the stroke, I wrote this:

However, the one symptom that’s lingering is something of a problem: If I stand for more than a few minutes, I feel “woozy” — not exactly dizzy, but headachy, weak, and faint. Sitting for awhile seems to relieve it, and lying down definitely does. I haven’t yet gotten in to see a neurologist (which is a whole other annoying story that I should skip!), but I suspect that’s a leftover from my cerebellar stroke. After all, when I stand my brain needs new connections to keep my balance. I tried to step over the baby pen in the nursery on Sunday, and almost fell over. I’ve never been terribly graceful, but now I especially need to take care!

(I stopped working in the church nursery for a while after that, because that incident scared me — I was holding a baby when I almost fell over.)

I was actually a little bit lucky about the timing at the beginning. I had previously requested time off in September to go to my brother Robert’s wedding in Oregon (and to see ALL of my twelve brothers and sisters!), and even though I’d used up all my sick leave, and was accepting donated leave, they let me use my annual leave for this instead of making me use it on sick leave. But also good was that I was able to mostly take it easy and take naps every day on that trip — thus getting much needed healing time. If I had been home, I was tired of being sick, and would have tried to go to work.

It was something like six months before I had a pay period where I worked the entire 80 hours. I used a LOT of donated leave, and was never told who was donating the leave. I am oh so thankful to my generous coworkers!

I did, eventually, overcome this. But it wasn’t nearly as simple as I thought it would be and took much, much longer than I thought it should. For a long time, even when I was back to work full-time, it was a strain to walk around the library “sweeping” for books left around, because that was just too much time walking.

However, two years later in 2013, I bought a condo by a lake and started getting up early to go walking, using a walking program from the book Walk Your Butt Off. After completing that program, I really did feel like my fitness level was back to my normal — but it really did take two years.

Could I have just done the walking program sooner? Maybe. But I physically could not have done the walking program at all in the first six months or so after the stroke. Maybe after that. As it was, two years later turned out to be enough to challenge me — but I ended up feeling like myself again, at least as far as energy levels.

Neck Pain

This one’s frustrating. But remember how I had a headache centered in my neck for four weeks before I had the stroke? (And the stroke happened after I went back on birth control pills.) Well, once I found out that pain was from a right vertebral artery dissection, now I knew exactly what a right vertebral artery dissection feels like. It was hammered into me over four weeks. And I know exactly what pain in my right vertebral artery feels like.

The vertebral artery dissection was explained to me as a kind of bruise on your artery. Then if a clot breaks off from it, that gets in your brain and causes a stroke. This is the most common reason for a stroke in younger people — though still very rare.

We have two vertebral arteries. This is because our necks are made to move. When we turn our head a lot in one direction, it can constrain one of our vertebral arteries, and the blood makes up for it going through the other vertebral artery.

I was told that I’d be put on blood thinners for six months while my vertebral artery healed. That would be to keep a clot from forming and to keep from having another stroke. Once six months were up, they decide whatever situation remains with my vertebral artery — that’s my new normal. Mine ended up being no longer blocked, but described in the MRA report as “diminutive.” So I’ve got one tiny vertebral artery and one normal.

But my neck pain didn’t stop when I had the stroke. Why would it? The blood thinners helped some, but for months, it hurt to turn my head when driving or to hold a telephone with my chin.

Strangely, when I continued to complain of neck pain, my neurologist decided to check if I had arthritis in my neck. Years later, a neurology intern told me that arteries don’t hurt.

This is STUPID! They know full well that vertebral artery dissections hurt. That’s the main symptom before a stroke happens. They also know that I have a teeny-tiny right vertebral artery. And I KNOW exactly what it feels like for my right vertebral artery to hurt. That continued pain I was having was exactly the same as the pain I’d had before my stroke — less sustained (not lasting four weeks, thank God), but in the same place.

Eventually, it did get better, but I still have flare-ups, and they always scare me. Oh, and at the beginning once I forgot to take a dose of Coumadin and then my neck started hurting. (You can’t tell me it’s not connected to my vertebral artery!)

It does turn out that lifting heavy weights — like books — with my right arm can aggravate it. I don’t know why this is so, but did read it somewhere. When I asked, my neurologist did tell me that vertebral artery dissection patients shouldn’t lift heavy weights — so he wrote me a note so that I could bring a wheeled cart to ALA conferences and the exhibit floor. I also started bringing a wheeled cooler to my job at the library to carry books back and forth, because using a tote bag wasn’t a good idea.

But all those precautions weren’t enough in January 2018. I went to ALA Midwinter meeting. I did use a wheeled suitcase on the exhibit floor — but on my way to the conference I lifted my heavy carry-on into the overhead bin on the plane. And later carried it up stairs onto a bus. That night, in a hotel room in Denver, my neck started hurting intensely. I laid awake, wondering if I should go to an E.R. I didn’t. I took some Naproxen, and the next day it settled down, and I didn’t have a stroke. Now when I fly in a plane, I look for a nice man to lift my carry-on for me.

About a month after that, I was shifting our Young Adult Fiction section at the library, spreading the books out over more shelves. I did a lot of lifting and twisting with my right arm — and again had right side neck pain. I made an appointment with the neurologist — and that was when an intern told me that arteries don’t feel pain. Grrrr. Anyway, I didn’t have another stroke and it got better.

Another way I can get neck pain is if I sleep with my head turned toward my left side so that my left vertebral artery is blocked. Unfortunately, I have my bed positioned in my room so that the sun comes in on my right side, and I often turn away from the light in my sleep and wake up with a headache. (I really should move my bed, but normally just use a blindfold, which sometimes falls off.) That always disturbs me — but I can usually change my position and turn my head toward my right side — and the pain will go away, thus proving it was indeed coming from blood going through that teeny-tiny artery. This does, however, make it harder to get out of bed on those mornings — I want to make the pain go away first. Though it’s usually fine after I get up.

Dizziness

Okay, if you have a stroke centered in your center of balance, you’re going to have trouble with balance. At first, I felt woozy if I stood up even for a few minutes.

That got better quickly, but I’d still have episodes where I’d be suddenly struck with dizziness — and every time, I thought I might be having another stroke — since vertigo was the main symptom of the first one.

After several false alarms, and more trips to the E.R. than were really warranted (but a stroke is traumatizing, and I was easily scared) — in December 2011, we discovered a new symptom. I had double vision if I looked up and to the right. My neurologist thought I must have had another stroke. He sent me to a neuro-ophthalmologist at Johns Hopkins.

The neuro-ophthalmologist told me that my double vision was Brown Syndrome, caused by inflammation, not by the stroke. I still wonder if there was actually some kind of nerve damage that was too small to show up in an MRI. But it doesn’t matter because there’s no treatment for it — I just close one eye when I look up and to the right and the double vision is solved.

More significant, he told me that these sudden bouts of dizziness were coming because my migraines had switched to vestibular migraines — where I got dizziness instead of head pain.

I was a little resistant to that diagnosis at first, but as I watched how the episodes behaved, they were indeed very much like migraines and came with a small amount of head pain. Did this happen because of the cerebellar deficit or because of low blood flow on my right side? There’s no way to really tell. But the wonderful news is that when my migraines got dramatically better about a year after menopause — these also got dramatically better. I haven’t had a vestibular migraine in a few years. I do still get regular migraines, but not very bad and not very often. And I am SO thankful. (I have gotten a lot of migraines since I was in fourth grade, so something like forty years of frequent headaches.)

I’ve had to make other accommodations over the years. For a long time, I was attending a church that met in a middle school auditorium — with a slanted floor. I found that if I was going to stand and sing or, worse yet, close my eyes to pray — I needed to hold onto the seat in front of me to give my brain another cue as to which way is up.

Now I almost forget that I have a cerebellar deficit. These are the things that are left:

— I now get car sick very easily. The simplest way to solve this is if we’re driving a winding road, I should be the one driving. If not, I’d better take the front passenger seat.

— Alcohol goes to my head more quickly than ever. I’m a small person, so I never could tolerate much alcohol, but now it seems like a sip will do it. That woozy feeling is almost like a vestibular migraine, in fact, and it’s just not pleasant enough to be worth it. I don’t drink much.

— Other things can affect me more than they would someone without a deficit. I had a nasty respiratory virus in January 2020 (probably too early to be Covid-19), and it hit with my ears being stuffy — and then I got incredibly dizzy with room-spinning vertigo.

This vertigo came on quickly — over about twenty minutes — but I did understand that it wasn’t the same as the instantaneous vertigo that happened when I’d had the stroke. It was alarming, and I eventually saw a neurologist when the virus and episodes of vertigo lasted six weeks — but the neurologist concluded (and I agreed) that the dizziness was caused by middle ear congestion and was just a lot worse for me because of my existing cerebellar deficit. My damaged cerebellum has adjusted to normal life, but this was something it couldn’t handle.

So all told — I consider myself very, very blessed to be so healthy after having a stroke when I was 47 years old. And after ten years, I’m feeling much, much better than after two years — so I’m here to say that healing happens!

Sure, there are still small deficits and I make small accommodations. But nothing is insurmountable, and I am so very glad to be alive!

Ten years ago today, when I was 47 years old, I had a stroke.

A friend has encouraged me to celebrate my Stroke-i-versaries (her word) because it’s a way to celebrate being alive!

I want to blog a little bit about it, because there’s not much out there on the web about recovering from a cerebellar stroke or a vertebral artery dissection, so ten years out, I’d like to give my perspective. I’ll highlight some take-aways as I go.

Don’t sleep on a plane without a neck pillow.

My trouble started when I went to ALA Annual Conference in New Orleans on June 24, 2011. Since I was flying in the middle of the day, I thought I wouldn’t want to sleep on the plane so I didn’t bring a neck pillow. However, my trip to New Orleans went through New York City, and on the second flight, I got really tired, so I tried to sleep with my head against the window. There was some turbulence, and my head and neck really hurt when I woke up. I thought I had just gone too long without eating, so I went straight to find food, but it wasn’t enough to get rid of the headache. At ALA, I made things worse by carrying multiple tote bags of heavy books all over the exhibit floor. I do remember that made the headache worse — and it was already centered in my neck, close to the shoulder where I was holding the heavy bags.

In the month that followed, I think at the beginning I had a couple days off from it, but then a headache developed that lasted for four weeks. It was centered in my neck, behind my right ear. I tried Maxalt. I had more than one doctor appointment. Nothing worked. I used up my sick leave, even trying to work through it most of the time. Working distracted me and was a way to bear it.

If you get migraines, you probably shouldn’t use birth control pills.

A doctor told me when I was young that migraineurs have a higher risk of stroke if they go on the pill, so all through my marriage, I hadn’t used it. But when I was 46 years old and divorced, I was getting frequent ovarian cysts, and a gynecologist wanted me to take birth control pills. I asked about the risk of stroke, but she said they’re lower dose now and it’s not a concern.

I was on the pill for three months, March through early June, and had no ovarian cysts. But I let the prescription expire. She told me to go ahead and get a refill and start the Sunday after my next period started.

I thought maybe being off the pill was causing the headaches. (I was reaching for any possibility.) I started it again on Sunday, July 24.

Don’t feel guilty about changing plans if you’re not feeling well.

I joke that the book Stonewall Hinkleman and the Battle of Bull Run saved my life. You see, it was the 150th anniversary of the Battle of Bull Run, and the site is nearby, and I’d been given tickets to a reenactment. But it was outside and you had to take a shuttle bus to the event — and the forecast was for 104 degrees that day.

The book is about a kid whose parents drag him to reenactments, which he hates and thinks are stupid. (Then he gets pulled back in time.) I thought about his perspective and thought about how I’d had a headache for a solid month and really didn’t want to go out in 104 degree heat — and decided to stay home and read the book instead. I didn’t go to church either, because the headache was really getting to me.

I don’t like to think what would have happened if I’d had the stroke that day instead of the next, out at a field in the heat at a crowded reenactment. So I’m very glad the book convinced me otherwise!

I did make a spinach casserole that night that used two bags of spinach. Later, I learned that spinach is full of vitamin K, which helps blood to clot. I still think the birth control pills were more responsible than the spinach, though.

The next day, I took my second birth control pill from the new prescription and went to work, scheduled 12:30 to 9. I was almost out of sick leave. I found an email that I wrote to a friend at 2:00 that afternoon, saying that the headache was still going strong after four weeks and I was thinking about going to the E.R. and begging them to give me some kind of shot for a temporary reprieve. But at least work helped me think about it less.

For dinner, I had some leftover spinach casserole.

If you get hit with vertigo that strikes instantaneously, it might be a stroke.

After dinner, I had a shift working on the information desk. In between customers, I was talking with Ivelisse, my coworker, and all of a sudden, the room started spinning.

I told Ivelisse, “I feel really dizzy,” and I must have showed on my face how bad it was, because she didn’t hesitate to tell me she’d help me get to the back. But then a customer walked up and asked for my help, and I couldn’t even look up the book on the computer — Ivelisse had to help him. I tried to close my computer windows before I went to the back and managed to get one closed, I think, but had to put my head down until she came back.

Ivelisse helped me get to the back and lie down on the couch in the break room, but I couldn’t walk straight and had to lean on desks and walls along the way. Once I laid down, if I moved my head the tiniest bit, the room started spinning again.

At first I hesitated, but when lying down didn’t help at all, I remembered that birth control pills can increase your risk of stroke, so I asked them to call 911. When the paramedics came, moving my head to talk to them made me start vomiting. I was also in a cold sweat.

Moving while in the ambulance also was awful, though they’d given me an I.V. for nausea.

I later learned that only 3-4% of people who go to the E.R. for dizziness are having a stroke — but a couple of signs that distinguish it are vertigo that strikes instantaneously and not being able to walk straight.

Maybe don’t tell the E.R. that you get migraines. Or don’t be a 47-year-old female.
The E.R. at Fairfax Hospital missed my stroke. By the time I saw the doctor, the dizziness had finally let up (about 45 minutes later). So technically that one was probably just a TIA — a transient ischemic attack. They did a CT scan and an EKG, but didn’t find anything. After I told them I’d had a headache for four weeks, they told me my migraines had changed.

This would be a dramatic change — I’d never vomited with a migraine except when I was pregnant.

They gave me a neurology consult and prescriptions for headache pills and anti-nausea pills and sent me home.

I learned later that CT scans only catch 26% of cerebellar strokes when they’re happening, because they’re surrounded by bone. In a small study of cases where the strokes got missed and the patients had another — 40% died with their next stroke, and 30% had permanent disabilities.

Don’t be afraid to ask for help.

I called my friend Marilynn and she drove me home from the hospital. I could hardly sit up. (I’ve often thought how they nicely use a wheelchair to help you out of the hospital when you’ve been admitted, but the time I really needed a wheelchair was that night from the E.R.)

The next day, Tuesday, I was too sick and out of it to fill the prescriptions or make a doctor appointment. I did send an email to friends telling them what happened and that it wasn’t a stroke or a tumor or heart problems, but asking them to pray. (I was still taking birth control pills.)

On Wednesday, I woke up without a headache for a little while! I thought it was from the Fiornal I’d been given, but enjoyed the reprieve. I made a doctor appointment for 9:20 the next day and thought if I felt good enough, I’d go to work after the appointment. I asked my friend Kathe to drive me to work to pick up my car. I told people at work that the doctors said I was fine and I planned to be back at work the next day.

If half of your face is tingling, call 911, for crying out loud!

I woke up Thursday morning, July 28, super dizzy, but not room-spinning. Just hardly able to stand up. I almost fainted when I went to the bathroom, and dived back onto my bed when I was done. Then I noticed my right side — both arm and leg — was tingling. Had I slept on them funny?

I laid there trying to figure out what to do. I didn’t want to call 911 because the E.R. had just sent me home. Besides, my son was sleeping in his room and I didn’t want to scare him. Besides, my room was messy. How could they fit their gurney in there? And I didn’t want to call them when I was in my nightgown.

But my dizziness got a little better, so I decided to get dressed and make breakfast and figure out what to do. I didn’t dare take a shower, but I managed to get dressed and then felt more able to face the day.

I made my usual morning oatmeal, lying down in between steps. Also lying down on the sofa, I called the doctor’s office to tell them I wouldn’t make my appointment. I talked to a nurse and I don’t know what I said, but she told me it would be fine to ask a friend to drive me to a military hospital — I didn’t need to call 911. Dear Reader, this was bad advice.

When I started eating my breakfast, I noticed that the right side of my whole face, including my lips, was numb, besides my arm and leg. Okay, I was going to the E.R.

Next I found a friend to take me. My friend Kathe, who lived a half-hour away, said she’d do it. I calmly told my son I’d be going to the E.R. Then I logged onto my computer to print a map to the E.R. for my friend. This was before we had cellphones, but I don’t know why I thought she needed this.

I discovered today that I even wrote an email to my small group asking for more prayer. Why did I do that? Here’s what I wrote:

Well, instead of going to my doctor appointment this morning, I’m headed for the ER at Fair Oaks. Would appreciate more prayer. The nurse at the doctor’s office said I could wait for a friend to pick me up, though that was before my whole right side started tingling again. Kathe’s going to take me.

I woke up this morning and got real dizzy when I went to the bathroom. Then my whole right side started tingling — arm and leg and even my face. I rested and managed to eat breakfast, got dressed, but didn’t try a shower. Cold sweat with the dizziness. Oh, and an intense right side headache, too. Anyway, I went online to print directions to Fair Oaks, but now think I will lie down until Kathe comes. I admit I’m freaked out!

About the time I finished writing that, it got bad enough again that I was getting scared. I finally figured out that I should probably call 911. But I called Kathe and she was only a minute away. So she helped me walk out to her van — I couldn’t walk straight again. I had to lie down in the back rather than sit in the front seat.

This time I went to Fair Oaks Hospital, and I’ll borrow from a post I wrote at the time to describe what happened:

And they got me in right away and looked me over. (Fair Oaks is a great hospital!) At first they didn’t seem very alarmed. They had access to the CT Scan that was done on Monday, so didn’t think it needed to be done again. But since I had that tingling on my right side (and that continued), they decided to do an MRI.

While they were doing the MRI, I was praying that if something was there, they would FIND it. Because I absolutely knew that I was not okay and I would have a really hard time believing these were new migraine symptoms.

Later, when they did send me for a CT Scan, I figured they must have found something. Sure enough, they told me I’d had a stroke, and they were going to admit me “overnight for observation.” Okay, I guess they tell you “overnight” at first to let you down easy! I was super glad I had taken the time to eat breakfast, because I didn’t get any food until after they admitted me at dinnertime. They did four tests that first day. I think the other two were a sonogram of my heart and an MRA (magnetic resonance angiography) of my head.

It took them a couple days, but they did figure out that the stroke was caused by a right vertebral artery dissection — basically a neck injury. I knew right away that it must have happened when I slept on that plane going to ALA Annual Conference. No wonder I’d had a headache centered in my neck ever since!

Oh, my son’s 17th birthday was the day after I went into the hospital. His dad had been planning to pick him up to visit on his birthday, so I told Tim to have him pick him up a day early. I felt awful about missing his birthday — I made a cake after I got home from the hospital.

I stayed in the hospital for ten days while they adjusted the IV blood thinner so I wouldn’t have another stroke. They sent me home with a prescription for Coumadin, a blood thinner. My small group leaders John and Lisa Maulella brought me home and took me to two stores to find the prescription. It was so hard to stand up long enough to fill the prescription!

And this post has gotten long enough. I do want to blog about the recovery process from the vantage point of ten years, but I’ll do that tomorrow.

Here are blog posts I wrote ten years ago, in the middle of it:

Journeys of Different Kinds
To the Hospital
Was I Scared?
In the Lucky Thirty Percent
The Road to Recovery

I’ve started back to work, as of last Friday. So that’s a good thing, right? For me, I think in some ways that’s when it gets harder.

I had a stroke July 25, which was missed by the emergency personnel, but then went back on July 28 with new symptoms and was admitted to the hospital for 10 days.

Now, I’ll be the first to tell you that I was tremendously, wondrously, gloriously lucky. The hospital’s occupational therapist and physical therapist checked me out and didn’t even think I’d need their services. So not only am I still alive, it looks like I have no permanent disability.

However, the one symptom that’s lingering is something of a problem: If I stand for more than a few minutes, I feel “woozy” — not exactly dizzy, but headachy, weak, and faint. Sitting for awhile seems to relieve it, and lying down definitely does. I haven’t yet gotten in to see a neurologist (which is a whole other annoying story that I should skip!), but I suspect that’s a leftover from my cerebellar stroke. After all, when I stand my brain needs new connections to keep my balance. I tried to step over the baby pen in the nursery on Sunday, and almost fell over. I’ve never been terribly graceful, but now I especially need to take care!

Anyway, I’m not someone who likes difficult decisions. Before the stroke, I had a headache that lasted three weeks, and every morning I had to figure out if I felt good enough to go to work or if I were just being a wimp. Then the stroke hit. Okay, now staying home was a no-brainer! Especially when I was in the hospital! But even after that, it was easy to understand I should take it easy and let myself heal.

But isn’t two weeks enough time? And how much do I need to do some standing and walking to help my brain build new connections? I did compromise by leaving early yesterday, and today I didn’t have to compromise — we got sent home early because of the earthquake! But it’s harder when there’s a decision. This is definitely not a contagious illness, so it’s all the harder to evaluate when I’m up to working and when I’m not.

Another thing is I almost felt guilty all that time off, having extra time to read and write book reviews. But since writing book reviews takes a lot more energy than reading — I’m still way behind with books I’ve read and want to review. So now my time off is up, and I am still behind. I don’t want to push myself extra. So that’s where not having energy for much more than work gets pretty frustrating.

Anyway, I already had vacation in Oregon scheduled for next week, so at least I will have next week off, decision-free! And it sounds like ALL my twelve brothers and sisters will be there with me at the end of the week for my brother’s wedding!

Today I was searching on the Internet for information about recovering from my stroke. My referral to a neurologist still hasn’t gone through. I’m doing very well indeed, but I have one disturbing symptom that’s keeping me from getting back to work: When I stand for more than about a minute, I feel woozy — not exactly dizzy, but headachy, faint, sick, and wanting to lie down. It’s not real severe, and comes on gradually, and generally feels better after a nap. But it is there, and I’m wondering if that’s my remaining effect of the stroke.

So, I Googled “Cerebellar Infarction” (the type of stroke I had). And then I got really distracted. Because I found out how lucky I was.

This article: Pitfalls in the Diagnosis of Cerebellar Infarction reported a study of people with Cerebellar Infarctions (like me), whose diagnosis was missed when they initially went to the Emergency Room (like me).

I got to that article from this one: The Clinical Differentiation of Cerebellar Infarction from Common Vertigo Syndromes. The article outlines the different common Vertigo syndromes and how Cerebellar Infarction is different. It said that only 0.7-3% of patients presenting with vertigo actually have a Cerebellar Infarction, but of those 35% get misdiagnosed.

I was sent home from the Emergency Department that Monday night with a diagnosis of vertigo, probably stemming from my migraines. They had done a CT scan, so I thought they were right, and I must be fine. I went back on Thursday morning (to a different Emergency Department) with additional symptoms (mainly a wicked headache and feeling faint plus right side tingling), and they did an MRI and learned I’d had a cerebellar infarction from vertebral artery dissection.

From reading the article, I can see how they missed the diagnosis. Once they found out I had a history of migraines (though never ever with vertigo), that presented an easy thing to blame. I did not realize that CT scans only catch 26% of cerebellar infarctions.

The article says that one tip-off of cerebellar infarction is being unable to walk without support. Well, I did walk from the Information desk at the library to the sofa in the back room. But I doubt I made it clear to the doctor that there was no way I could have done that without the help of my coworker. And I leaned on every desk or wall that I passed along the way, and was not able to walk straight. (By the time the doctor saw me, probably 45 minutes after the initial attack, the vertigo had just ended. So I was able to walk by the time they were done with me.)

Anyway, the really sobering part of the article was this: In the study of misdiagnosed cerebellar strokes, 40% of the patients died! Out of the remaining 60%, half of those had “disabling deficits.” So as it looks like I will get through this without disabling deficits (assuming the wooziness clears up), it looks like I am in the “Lucky” 30%.

Now, the study was based on a small sample. But the fact remains: I am glad I asked for prayer after I went home from the Emergency Room! And I am all the more thankful to be alive and thinking and functioning!

So I am going to have to stop thinking about this, though. After researching it and reading the articles this morning, I really didn’t feel good and slept all afternoon! But let me go on record as being thankful to God that my life was spared!

One of my friends asked me if I was scared when all this happened. That made me think. Was I scared?

Well, it basically all happened too fast to be scared. Things I have read after the fact made me realize that the whole thing could have turned out much, much worse. But the fact is, it didn’t.

I admit I was scared when I was at the library and suddenly the room started spinning. But in some ways it was a relief — I KNEW something was wrong. Why was that a relief? Well, for three solid weeks I’d had a headache every morning and had to decide whether I was well enough to go to work. I had even been thinking of going home early that very day, but told myself, no, I wasn’t sick enough.

It’s like when my son was three years old. He started throwing fits at naptime, until finally I stopped making him take a nap. He wasn’t sleeping anyway. But it was a tough decision. Did he need a nap? His older brother had taken them right up until he went to Kindergarten. However, a couple nights later, he threw a major tantrum from 2 am until 3 am, screaming “I want to stay up all night and all daaaaaaay!” There was no agony at all in that decision. Nice try, kid, but sorry, you have to go to sleep!

That compares a little bit to how I felt when I knew, with no question, that something was wrong. All those previous three weeks, I’d had to make decisions about going to work with a headache. Now the decision was out of my hands. I was not able to stand up, let alone work.

I did ask them to call the paramedics when I remembered that since I was on birth control pills (for the trouble I’d been having with ovarian cysts), I was at slightly higher risk for stroke. When the paramedics came, I started vomiting, and rather than make me more afraid, that simply made me all the more certain that something was indeed wrong. No more agonizing decision! I was sick.

I did hear one of the paramedics tell the hospital staff something to the effect that I was at a zero on the “stroke scale,” so from that moment I was no longer afraid it was a stroke. However naive that confidence was!

Now, I had gotten afraid a year and a half earlier, when for three months I was having trouble with headaches that lasted two to four weeks. But they had done an MRI and found nothing wrong. And then they found a preventative that wiped out my headaches more effectively than ever before in my life. Since the preventative dealt with serotonin levels, I was sure they were right and the headaches were just a new migraine pattern. So this time, it felt really similar, and I was easily pacified and told this was probably just a new migraine pattern of some kind. That did make me nervous, but I trusted the hospital staff. Surely, if it was something dangerous, the CT scan would have caught it? I didn’t want to be subject to vertigo as a new migraine symptom, but if that’s what it was… I went to work on Wednesday and told them that whatever had happened, at least it wasn’t anything serious….

Then, when I woke up Thursday morning feeling faint and tingly on my right side, once again it happened too suddenly to be scared. I wasn’t thinking about the future, just if I could get “ready” for the paramedics. Or could I get a friend to drive me? Call me vain, but my first thought was of just getting to my phone and calling the paramedics — but I blanched at the thought of them finding me in my sleep shirt! I did feel better — able to stand — after lying down for a little while. So then all I was thinking about was getting food and taking care of details. I was able to call the doctor’s office and cancel my morning appointment and talk with a nurse. I was able to get dressed and eat breakfast. I put a bag together in case they decided to admit me to the hospital (figuring that by Murphy’s Law, if I did that I wouldn’t get admitted — Too bad it didn’t work this time!). I grabbed not one but two books to have with me at the hospital, my phone and its charger, and the papers they sent me home with on my earlier hospital visit.

All those things to do gave me something to think about rather than be scared. I did get worse just before my friend arrived, but then she arrived and I was able to get to her car and then I was on the way to the hospital.

I have a lot of trust in doctors. Once in the hospital, I could lie down and let them figure out what was wrong!

I do know that some time in the hospital — I’m not sure when it was — I wondered if I was going to die. I don’t want to die, not at all. There’s a whole lot more I want to do with my life, and I especially don’t want to leave my sons yet. But I found myself thinking that if that happened, at least I wouldn’t have any more headaches! I do firmly believe that God would look after my sons. (Though I’d much rather do it.) And I realized that if I die before I mean to — well, the repercussions will fall on other people. I would then get to take it easy! So I did pray, telling God that I really don’t want to die yet, but if it’s His time to take me, He’s going to have to take care of my boys and all the loose ends I’d be leaving in my life.

But that was just one bad moment. And it wasn’t being scared, it was thinking through the fact that even if the worst happens, I don’t need to be afraid.

I did find myself praying as the MRI was being done, “Lord, if there is something for them to find, let them FIND it!” because I was not ready to go home again and be told this was a new migraine symptom! It was way too extreme for that!

But I never did feel like what I think a “stroke patient” feels like. The stroke hit my balance center, and not my language or thinking. Thank God! After the fact, I’ve read a lot more about what could have happened.

In fact, my most fearful moment of all was when I’d been home for five days. The doctor had gotten the results of my blood test, and my Coumaden levels were a little high. He asked me to skip my Coumaden dose that evening, and get my blood drawn again in the morning. Coumaden is a blood thinner, keeping me from getting any more clots. Too much, though, and you are at risk for bleeding.

However, when I went to bed that night, about five hours after skipping my Coumaden dose, the right side of my neck was hurting horribly, feeling a lot like it did when the stroke happened. I quickly imagined all the blood in my body clotting there. I went downstairs and split a pill in two and took half, but I had a very bad night. I took Percocet, which didn’t phase it a bit. I was afraid to get up, for fear I’d faint again. You see, now I knew what a stroke can do, so I was a lot more scared than before, when I hadn’t thought much about them.

But I did wake up the next morning with my neck feeling completely fine. I’m still getting a very low grade headache, but I’m quite sure it’s from the vertebral artery dissection and not a migraine. And Tylenol actually works for it most of the time!

Now I’m back to that difficult decision. When am I healthy enough to go back to work? Am I tired because of lying around so much, or does my body just need rest so it can focus on healing? In other words, should I push myself, or should I do the opposite?

I’m kind of doing a cross between the two. I’m driving myself to the clinic to get blood drawn. Yesterday, I did the grocery shopping with my son. It did wipe me out, so I took a long nap afterward. I’ve started cooking dinner for us, but I’m cooking things that have lots of leftovers, so I don’t need to do it every night. Tomorrow, I’m going to go to church and see how I do. I’m thinking that I can definitely go to work. I’m aiming for Tuesday, since I have to get blood drawn on Monday. The big question is how long I will last, or if I’ll have energy to go to work the next day!

So the answer to the question, “Was I scared?” is No, I really wasn’t — but that may have been because I didn’t really understand what was going on! One thing’s for sure: I feel loved and protected and cared for — by God and also by my friends and family. I know I was upheld by many people in prayer. And I am going to be okay. And this whole episode went much, much, much better than it might have. Thank you, thank you, everyone who prayed for me.

In fact, right now I’m listening to a new Peter Furler CD, and a song is playing based on Psalm 23. These words seem perfect:

“Even though I walk through the valley of the shadow of death,
I will fear no evil,
for You are with me.

“Even though I walk through the valley of the shadow of death,
Your rod and Your staff,
they comfort me.”

So, on Thursday, July 28, I had a 9:00 doctor appointment as follow-up for the vertigo that had brought me to the emergency room the previous Monday. My clinic is quite close to my work, so my plan had been to go to the appointment, then see how I was feeling and probably go straight to work afterward.

But when my alarm woke me up, I had an awful headache. I managed to get myself out of bed and knew immediately that I would not drive myself to the appointment, but would go to the emergency room instead. I did manage to use the bathroom, and I didn’t exactly have vertigo like before, but I definitely felt like I was going to faint. I rushed back to the bed and laid there with my heart pounding, wondering what to do. Then I noticed that my right arm and right leg were numb and tingling. Had I been sleeping on that side, so they were just “asleep”?

Some said I was smart to go to the Emergency Room. Well, that part didn’t take a decision at all. I absolutely knew this fit the criteria on my discharge papers that I should go back. But should I call the paramedics, or should I get a friend to take me?

Where I was maybe not so smart was that I decided I did NOT want the paramedics to come when I was still in my Sleep Shirt. And they wouldn’t have room for a stretcher in my bedroom, with all the books on the floor! So vanity made my initial decision for me. I was feeling slightly less woozy, so I got up and put on some clothes. I did not go so far as to take a shower — I was really afraid I’d faint if I tried that.

I did wake up my one-day-less-than-17-year-old son to tell him I was going to the Emergency Room rather than to work, so I didn’t know when I’d be back. I wasn’t quite sure he really heard me! (This was early for a teenager.) I put together a little bag with some changes of underwear just in case they admitted me.

Okay, next step: I thought I’d get some breakfast. Maybe I’d feel better after eating? My standard breakfast is oatmeal, so that takes a little time to cook. I went to the sofa and laid down every minute or so and managed to get the food made. As I was eating, I noticed that the right half of my face — particularly my lips — was numb and tingly. That freaked me out completely. Now I was sure I was going to the Emergency Room.

I still wasn’t sure though, whether I could have a friend take me or if I should call the paramedics. I decided to call my doctor’s office, since I definitely wasn’t going to make that appointment. By then, I was feeling considerably better. I think the tingling had mostly passed, and I was lying down on the sofa when I made the call. They cancelled the appointment and told me to go to the hospital, and that I could have a friend drive me.

I called a couple friends, and found one who was able to take me and left right away. (Thank you, Kathe!) I tried to figure out what to bring and made sure I had everything I wanted. Then I thought I’d print a map for her to the nearest hospital. Somewhere while I was printing out the map, I started feeling awful again. I actually called Kathe, and if she hadn’t been only two minutes away, I would have called the paramedics. But she showed up right away. She helped me walk unsteadily — I couldn’t walk in a straight line — to her van, and I asked to lie down in the back seat instead of sitting up. She got me to the hospital quickly.

And they got me in right away and looked me over. (Fair Oaks is a great hospital!) At first they didn’t seem very alarmed. They had access to the CT Scan that was done on Monday, so didn’t think it needed to be done again. But since I had that tingling on my right side (and that continued), they decided to do an MRI.

While they were doing the MRI, I was praying that if something was there, they would FIND it. Because I absolutely knew that I was not okay and I would have a really hard time believing these were new migraine symptoms.

Later, when they did send me for a CT Scan, I figured they must have found something. Sure enough, they told me I’d had a stroke, and they were going to admit me “overnight for observation.” Okay, I guess they tell you “overnight” at first to let you down easy! I was super glad I had taken the time to eat breakfast, because I didn’t get any food until after they admitted me at dinnertime. They did four tests that first day. I think the other two were a sonogram of my heart and an MRA (magnetic resonance angiography) of my head.

When I had dinner, my roommate on the other side of a curtain said it smelled delicious. She asked what it was, and said she was on a liquid diet, so she was enjoying my food vicariously. I asked how long she was on a liquid diet, and she said For the duration! It turned out (from her phone conversations and such) that she was dying of cancer, but had just had surgery to drain her stomach from fluids that were making her sick, which had her feeling much better. She told friends that earlier that week, she thought she was dying, but thanks to the surgeon, now she was hoping to walk unassisted in her son’s wedding next month. She was an inspiring Christian lady, and definitely nipped any desire I had to complain in the bud right at the start!

The next day was my son’s 17th birthday, so I was sad to be in the hospital, but still rather dazed. (And his Dad had picked him up the day before, so I knew he was in good hands.) They didn’t let me eat, because they had two more tests scheduled. This was an MRA of my neck and a TEE (transesophagal echocardiogram?) of my heart. For the TEE, I had to swallow an ultrasound probe, so they could get an ultrasound of my heart taken from the esophagus. They were still looking for a reason I’d had a stroke. Oh, and they sedated me for the TEE, so though I remember the unpleasant experience of swallowing the tube, I don’t remember anything else about that procedure.

Anyway, the good news was that my heart is strong and healthy. However, the MRA showed the cause of the stroke. I’d had a Vertebral Artery Dissection. The neurologist described it to me as a brusing of an artery in my neck.

I immediately made the connection with the lowgrade headache I’d had for the last four weeks. I had noticed one thing about it that was different from my other headaches — I was super sore in my neck, right behind my ear. I also remembered how my neck had been hurting pretty consistently since ALA, when I tried to sleep on the plane and slept in a bad position. (That decision not to bring my neck pillow was a bad one!) I had chalked the headaches up to lack of sleep, but I now think it was a bit more than that!

That second day had some additional drama in that my roommate really wanted to be discharged. She had tickets to see Hairspray, and she explained to the (male) nurse that it was super important for her to really enjoy what was left of her life, so she would probably leave whether she were discharged or not. We were all very happy when she was indeed discharged!

Now that they knew what was going on with the stroke, they had me on a Heparin IV and Coumadin pills. They said I would stay in the hospital until the Coumadin was at a therapeutic level. Fortunately, I hadn’t had any more numbness or tingling since the first day. I had decided that in the hospital was a good time to stop my caffeine addition (three caffeinated drinks a day), and I had only had one meal Thursday and Friday anyway.

But Saturday and Sunday were taken up with awful headaches. I took as much morphine as they’d give me, and then they switched to Dilaudid. I felt better Monday, then started having the awful headaches again — throbbing, super-painful headaches that went away after about ten minutes — but then came back again. After a very bad day with that, the doctor reasoned that the Dilaudid might be causing the headaches, and switched to Percocet. After about a day, those super-intense headaches completely disappeared, thank God!

So from there, it was a matter of waiting for the Coumadin to get to a therapeutic level. I didn’t have a lot of energy, but managed to do a little walking. Dear friends came at different times, and I also got calls from friends, so I felt loved and supported.

Finally, on Saturday, August 6, my 10th day in the hospital, I got to go home!

I began writing Sonderbooks 10 years ago this month! (Wow! I just realized that!) It began as an e-mail newsletter of book reviews. I noticed quickly that I got the most reactions from reviews that included my personal thoughts about the book. Later, I made a website, sonderbooks.com, and finally in 2007, I added a blog. I figured the Sonderbooks blog would be for the book reviews, and I added this Sonderjourneys blog for more personal thoughts. At the time, I was thinking of all the traveling and picture-taking I did while living in Europe. A blog would have been a perfect way to talk about all the castles I visited.

However, I don’t travel so much any more, and when I do, it’s often book-related. I decided to blog about this year’s ALA Annual Conference on my Sonderbooks blog, since the whole event was about books.

But Sonderjourneys is a good place to blog about life journeys. My last entry was my Christmas letter at the end of 2010. As you can tell, I was hoping that 2011 would be a happy start to a new life as a divorced woman.

And, yes, it has been good. Early on, I had some rather annoying trouble with ovarian cysts. Didn’t feel much like blogging about them. But ALA Annual Conference was fabulous, so I put that in the Sonderbooks blog. I did finish my book and have been sending it out to agents. I also finished a second book that includes my passion for math — a book about using math to make codes with colors and patterns. I’m very happy with it, but I still want to find an agent who likes my fiction, so I’m starting by sending out the novel.

I’m also super pleased to be back at the library. I’m enjoying the big beautiful regional library where I work now. I’ve been learning all the resources in the Virginia Room at our branch and researching my own genealogy and having a lot of fun with that.

And I’m particularly looking forward to going to my brother’s wedding the last week of the summer in Oregon — or at least I really hope I can go!

Because last week I had a stroke.

So I figure that recovery may end up being a fairly big journey. Time to blog about life again.

First, yes, I am young for a stroke. I’m 47. Here’s a wikipedia article on vertebral artery dissection, which is they think what started mine. They’re not sure what caused the vertebral artery dissection.

My personal theory involves wondering if something got started on the trip to ALA. My headaches (which I’ve had all my life) were doing unusually and amazingly great until I went to ALA Annual Conference. Now, I didn’t get enough sleep during the conference. I also slept badly on the plane — with my neck at a bad angle that set it aching. And then I carried around big heavy bags of books. I remember that hurt more than it felt like it should have — from my shoulder all the way through to my neck.

Anyway, I started with a lowgrade headache that lasted four weeks and wasn’t affected by anything I tried taking. A few things like Vicodin allowed me to sleep, but then the headache would be right back where it started. I found that working through it seemed to work better than staying at home lying in bed — if only for the distraction value. When I laid in bed with nothing else to think about, I felt worse than when distracted by questions to answer and the like. But some days, it was hard to face work, and it was always hard to get out of bed with a headache.

So last Monday, I went to work with that same lowgrade headache. The pain wasn’t any worse than it had been, but I was finding it very difficult to concentrate. I was thinking about asking to go home (but not wanting to use the leave), but went ahead and had dinner and was sure I was going to make it through the day.

Then — just sitting calmly at the Information desk, in between customers, simply talking with my co-worker — all of a sudden I was hit with incredible dizziness. The room was spinning. I could hardly see straight to close the windows on my computer of my e-mail. (I think I got one window closed and then gave up.) I put my head down, and my co-worker came back from answering a patron question and then helped me walk to the back room and lie down on the sofa. I couldn’t walk in a straight line and the room was still spinning.

I was hoping that lying down would take away the dizziness, but it just did not. Any movement of my head whatsoever sent the world spinning again. I was also in a cold sweat. After 5 or 10 minutes I got to thinking about what I’d been told about birth control pills putting a person at higher risk for stroke (I’d been on birth control pills for the ovarian cyst problems.), and asked my boss to call the paramedics.

When the paramedics came and asked me to do something that involved moving my head, I began vomiting up my dinner. This was not fun, and quite freaky. I’ve had hundreds of migraines in my life, but never with vertigo like that.

And riding in the ambulance was nothing as fun as it used to look on my favorite childhood show, Emergency! The movement made the dizziness worse, but they did give me a shot of an anti-nausea drug in my IV. The dizziness stopped right about exactly when the doctor came to see me in the emergency room, wouldn’t you know it!

They did a CT scan and an EKG. They did some neurological tests and I heard them say that markers for a stroke were negative. Everything came back negative. So we were thinking it might be some disturbing new variation of my migraines. I was supposed to follow up with a neurologist. I found a nice friend willing to drive me home. (Thank you, Marilynne!)

The next day, I was pretty out of it. Now I was not feeling like pushing myself. I still had a headache and felt pretty yuck. I didn’t even have the energy to make the doctor appointments I needed or get the prescriptions filled. Fortunately, I wasn’t having any more nausea or dizziness.

On Wednesday, I still wasn’t feeling great, but I did manage to call and learn that Tricare wanted me to make an appointment with my primary care provider before I could make one with a neurologist. So I made an appointment for Thursday morning. Another friend (Thank you, Kathe!) took me to pick up my car at work, and I told them that I would hope to come to work after the Thursday morning appointment. I got home after picking up the car and went to sleep, but otherwise did think I was feeling better, though I still had the headache.

Thursday was when everything hit. I’ll write more in another installment…

Life is interesting, isn’t it? I couldn’t have predicted any of this at the start of the year. But God does continue to feel near — in a way He never did before the whole awful divorce journey. One wonderful verse he’s given me is Hosea 4:17 — “Therefore I am going to allure her; I will lead her into the desert and speak tenderly to her.” Sometimes, when God leads us into the desert, it’s so we’ll hear his words of love more clearly. May that happen here.