It occurs to me that while I talk a lot about migraines to many people, I haven't laid out the entirety of them to anyone. Including myself. Not even my two doctors (my general practitioner and my neurologist) have this full history and symptom set. And as I haven't laid this out myself, I practically have to start from the beginning and think about it each time I try to tell someone about it. That's really REALLY hard when I'm in the middle of a migraine.
Fair warning, I am currently in the middle of a migraine so this might come out as garbage. It also might simply serve as a framework that I'll come back and edit. But for now... lets do this!
Let's go over history first. I really want to talk about the symptoms, but I believe the symptoms have changed over time. At the very least, my perception of the symptoms have changed.
I've always had headaches. When I was very young I had several surgeries on my eyes. The primary reason was that one of them, I believe it was my right, had far less muscle control. It pulled far to the outside. The first couple surgeries were to reduce the muscle strength there allowing the eye to center itself. The following surgeries were to correct problems that arose in the first surgeries. I'd have to look it up, but I believe in total I had 7 or 8 surgeries. Most when I was an infant, but the last was easily memorable as I was around 11 years old. I remember coming home from that last surgery and staying on the fold out couch for about a week of recovery. I also have the story, told to my by my parents since I don't remember it, about coming out of the anesthesia and violently hitting a nurse. I evidently gave her a black eye and was afterward restrained to the bed. To this day I have to tell anesthetists that I had a violent reaction, even though it was now over 35 years ago.
I blame these early headaches on the eye problems. Getting used to wearing corrective glasses is something that many people get headaches from, and my prescription changed quite a lot. I also had to wear patches that would force one eye to work harder. More or less, it was forced eye strain that leads to headaches.
I didn't think of these headaches as anything strange. I remember them in middle school, high school, the first few years of community college, the year up at Ferris, and the years at college studying photography. But the more I talked to people later, I realized most people don't have that many headaches. While most people might have a headache once or twice a month (or even rarer) I have them several times a week. I would go through bottles of Tylenol several times a year.
This changed a bit in photo school. Obviously we're working with large powerful flashes when shooting in the studio. We had lighting sets that used over 1000 watts per second. VERY powerful and VERY bright. There was a particular session where a friend and I had some studio time and needed to use our most powerful light. All 1000 w/s in one shot from the one light (a lot of other backup lights to even things out). The flash and power supply, however, were being problematic. My friend worked on the power supply while I worked on the light itself. I'd taken the soft box off the light to fiddle with the bulb itself and just as I put the soft box back on he asked if it was ready. I answered yes.
FLASH
He had immediately hit the fire button while my face was inches away from the box. Understand, when this light goes off alone, facing away from you, it was bright enough to leave after images in your vision. I was blinded by this light for several minutes. It was so intense that I felt the heat of it on my face for an hour afterward. It was so bad that it affected my other senses in that I had a ringing in my ears for hours afterward. My vision wasn't normal for a couple days. And the headache? The resulting headache was the worst I've experienced up to that point. It too lasted for days.
From that point on I noticed that many of my headaches included light sensitivity. Did I have that light sensitivity before? Maybe. Maybe I just hadn't noticed it or focused on it. Maybe not. But it was there afterwards, both as a constant sensitivity and as a symptom of many headaches. I'll go more into the light sensitivity later when I discuss symptoms.
It's around this time that I started noticing my headaches more. I learned that I have severe headaches and that I have them far more often that most people around me (naively I thought they were the lucky ones and not that I was the cursed one). They also seemed to get more severe around this time. I don't remember missing days of school due to headaches before this, but I missed several days of photo school due to them. I missed days of work, days of nursing school, and days of nursing work too.
In 2013 I got my first job as a nurse. In November that year I was hired as a state employee with health insurance. I hadn't had health insurance since I was covered by my parents plan in 1992. Almost a year later, in late 2014, my family doctor retired. He was still listed as 'my' doctor though so I got the notice and the opportunity to choose another doctor in the same practice. I figured that would be easiest as he'd have full access to all of my health records as opposed to waiting until I needed to see a doctor and more or less starting over. Understand, I was primarily thinking about my eye surgeries as my health records as I didn't have a lot of health problems before this.
As a new doctor/patient relationship he wanted to start with a physical. Yes, it was the full physical but it was also a 'getting to know you' appointment for both of us. It's where we established that I was a nurse, but when in his practice I wouldn't think like a nurse. I wouldn't try to self diagnose or come to him with a solution. He was my doctor and I was his patient. He asked me about any problems I was concerned with and I mentioned my frequent urination, constant thirst, and my frequent headaches.
The first two we both knew were easy signs for diabetes. We went down that road with blood tests, medications, and various other treatments. That's an ongoing part of my life, but thankfully not a part of my migraine story. I figured the headaches would just be an acknowledgement on my medical record but because they were almost always treatable with Tylenol or Tylenol and Motrin, that it wasn't worth looking further into. He took my full history on the headaches including how long I'd been experiencing them, how they specifically felt, how long they lasted, and any other symptoms (light sensitivity) and said that they weren't headaches. They were migraines.
Here's where I'm going to take a moment to describe the difference between a migraine and a headache. A migraine is a condition all on its own that will almost always include a headache, but the headache is only part of the migraine. Medical science doesn't know what causes migraines and while there are many treatments, they don't know what cures them either. There are literally dozens of things that can inspire a migraine and they are different and individual to each person. They include mensuration, weather, stress, tastes, smells, sounds, and emotions. The most common symptoms for migraines, in addition to the headaches, are light sensitivity, neck pain, nausea and fatigue. But they also include sound sensitivity, nerve (touch) sensitivity, thought disruptions, muscle disruptions (clumsiness), insomnia, and many many others.
Migraines have four stages. Prodrome, aura, attack and post-drome. The prodrome are symptoms that occur up to two days before a migraine and include things like constipation, food cravings, increased urination, fluid retention, and increased yawning. The aura can occur before or during an attach and include symptoms like visual phenomena, vision loss, pins and needles sensation in an arm or a leg, weakness or numbness on one side of the body, and difficulty speaking. The attack is the symptoms I described above and almost always includes a headache. Some texts simply refer to this as the migraine headache, but again they do NOT always include a headache. And finally the post-drome is a sensation that can last for a couple days after the migraine. It includes feeling of fatigue, a different kind of headache, a confused sensation, and feelings of elation.
As you can see, a migraine is not simply a very bad headache. That's what many MANY people thing including health professionals I work with. When I'm in the middle of one and complain about it I'll often get the response (from a nurse or a doctor) of "oh yeah, I get headaches too".
So, my doctor had already noted that I slightly high blood pressure and was going to put me on medication for it, but decided to use propranolol as it was a blood pressure medication that was only so-so at lowering BP but could reduce the severity and frequency of migraines. It would help prevent them! He also prescribed Imitrex to use when I experienced a migraine.
The propranolol seemed to work, at least a bit. Its hard to say though as I wasn't keeping good track of them before and was still trying to figure out the difference between my 'normal' headaches and the migraines. The Imitrex... well, it worked horribly. I projectile vomited the first time I took it. I thought it might be some other combination of symptoms so I tried it again with my next migraine and the same thing occured. Nausea is a known possible side effect of Imitrix, and I was just experiencing an extreme example of it (and just imagine projectile vomiting DURING a migraine... it's beyond terrible). So that experiment lasted all of two attempts.
At my next appointment we upped the dose of the propranolol. It seemed to help a bit, but only for a few months, then I started getting more frequent migraines and more severe ones. The frequency at this point, as it was the first time I was truly tracking them, was about one every other week. Sometimes one a month, sometimes one a week. It was no where near enough of an effect though so we upped the propranolol to its max does on our next visit.
Nothing.
This process had taken about a year and a half. That's when I was introduced to my neurologist. His appointments are far more difficult to get so the progress is much slower. At our first visit, he described the 'normal' treatment plan (emphasizing that plans are as individualized as migraine types, symptoms, attacks, and patients). I'd already been through step one and two; a beta blocker (propranolol), and an anti-anxiety medication (I'd been on Wellbutrin to quit smoking and had remained on it for emotional reasons). The next steps would be anti-seizure medication. If those didn't work, it was on to more exotic treatments including Botox and several treatments that were just getting approved at that time. His first treatment was Topamax. It's an antiseizure mediation that has a very good track record with reducing migraine frequency, although it doesn't do much for severity.
And Topamax worked very well. I'd say it cut my migraine frequency down by about 2/3. But one side effect was devastating. I lost words. Almost exclusively proper nouns. Peoples names, the names of drugs... stuff like that. I would look at someone like my brother or a co-worker and know exactly who they were, but forget their name. There wasn't even hesitation as I'd just start speaking knowing that their name was part of what I was going to say. For example I'd intend to say "Hey, I have a patient with a weird problem and would like your opinion Mary" but would instead say "Hey, I have a patient with a weird problem and would like your opinion...." and nothing would come out. I didn't know her name. This was particularly noticeable when handing out medications to dozens of patients, as part of my job was. I'd lay out the meds and point out what he was getting: "Here's your Lisinopril, your Metformin, and your Lopressor." But instead of that I'd say "Here's your Lisinopril, your.... um... Glucophage, and your.... uhhh.... Metoprolol." Glucophage is another name for Metformin and Metoprolol is another name for Lopressor, but I don't often use them. Especially Metoprolol as I just stumble over it as opposed to Lopressor which just flows off the tongue. It was embarrassing and did one of the things a nurse shouldn't do... inspired a lack of confidence. When a nurse hands you your medication and stumbles over the names.... you just don't trust that they're right.
So obviously that wasn't going to work. I hated stopping it as it really was working quite well, but I couldn't live with the side effect. Next up was another anti-seizure medication. Depakote. It took forever because I had to taper off the Topamax and then taper up the Depakote. If it had any effect, it was minimal so we upped it to the max dose. It still had very little effect.
Around the same time we started Topamax, my neurologist also prescribed Eletriptan. Eletriptan is the next generation of Imitrix. It didn't have the strong nausea effect on me, but it never stopped the migraine. What it seemed really good at was making me tired. About 30 minutes after taking one, I'd fall asleep for a 30-60 minute nap. I'd wake up with the migraine reduced by 20-40% but never gone. I stayed on Eletriptan mainly because it was better than nothing until I was prescribed Nurtec.
That whole process of the Topamax and Depakote took several years. It was only last year that we decided to move on and try Nurtec. It had just been approved not only to use during a migraine, but to take regularly to prevent migraines. It took months to get approval for it as it is VERY expensive. Street price of a single dose of Nurtec is just under $100. I pay $60 for 24 doses, so the insurance is paying over $2000 (with discounts it's probably closer to $1000, but still a lot more than the $20 bucks they ditch out for my 90 day supply of Lisinopril).
The first dose of Nurtec I took was the miracle I was looking for. It made the migraine go away. NOTHING had ever done that before. But the next one didn't do a damn thing and the next one seemed to make the migraine worse. Over about 18 months I took enough to work out a ratio. About 1/4 of the time it wipes out the migraine pushing me to the post-drome fatigue/headache within a couple hours. 1/2 the time it eases most or all of the symptoms but doesn't take it out. And about 1/4 of the time it either does nothing or makes the migraine worse.
When I finally saw the neurologist again he agreed with what I thought... it's not working well enough to even consider prescribing it as a preventative. Next up is Botox. I got my first dose three weeks ago now and it does seem to be working as my migraine frequency has been reduced... but the full evaluation period is between 10 and 12 weeks for a reason. If it works, but doesn't work very well, we can up the dose. Then after another 10-12 week evaluation, we can up the dose again if needed. My neurologist believes we can target between a 50% and 90% reduction in migraines.
That's my migraine history. Let's go over symptoms.
Anyway, my doctor said that the light sensitivity that I got with many of my headaches indicated a migraine attack. He did say that not ALL of my headaches were migraines and that I might also have cluster headaches, but that they were being treated well enough. He wanted to focus on the migraines. He wanted me to keep a journal of basically everything I did or felt before a migraine, everything I felt during a migraine, and everything I felt after a migraine. I didn't get all of this information at once, it's literally taken me years to get this together, but here's how my personal migraines work:
The only prodrome symptom I have is a general sleep disturbance. Sometimes I'll be fatigued, going to bed early and staying asleep for nine or ten hours (my normal sleep is seven to eight hours). Other times I'll have an insomnia where I'm not tired at all and even when I lay down to sleep have trouble getting to sleep. Experiencing these sleep disturbances don't mean I'm going to have a migraine, but almost every single migraine I've had is preceded by them.
Most things I read about aura are that they last for an hour or two, so I'm not sure that I have an aura. The closest would be light sensitivity as I'll often experience that before everything else, but it lasts through the entire attack phase.
My attack symptoms aren't always the same. Most often they include the headache, light sensitivity, and confused thoughts.
My migraine headache is very specific and different from my other headaches. It is specifically on the left side of my head, from the crown to my jaw. It comes in waves going from the top to the bottom and slowly increases in intensity for around twenty minutes then lowers in intensity for ten to twenty minutes. The intensity is a big variable as sometimes it's just a sensation I feel with hardly any pain whatsoever. Sometimes the pain is almost more than I can bear and a 9 on a 0-10 pain scale (in nursing speak, a 0 is no pain whatsoever and a 10 is the worst pain you can imagine. Since I imagine having my arm ripped off would hurt more, I put the worst migraine headaches at 9... but they are almost the worst thing I could imagine!). So, sometimes almost nothing, sometimes debilitating pain, and sometimes anything in between.
The light sensitivity is hard to describe. The easiest part to get is that light hurts. I have to shield my eyes from sunlight or even a bright blue sky. If I'm walking down a hallway with windows on the left, I have to look to the right or down. If there are normal bright lights in the ceiling, I have to look down. It hurts. But it's also a physical sensation. I can feel the light. If I look at a light it feels like someone is taking a finger and pressing it against each of my eyes. The brighter the light, the harder they're pressing. I can close my eyes and still feel that pressure if I'm facing light. The only way to completely stop that sensation is to cover my eyes (generally with my hands). And the more I'm close to light, the more it adds to the overall headache. The light sensitivity makes the headache worse.
Confused thoughts. This is probably the most frustrating and the most frustrating to describe and have it understood. When I'm experiencing this, I'm honestly not thinking 'right'. I'm thinking slowly and am generally messing up everything I do. These include tasks that are based on muscle memory. If you ask me to think about something and give you an answer, the answer will likely be wrong as I just can't concentrate enough. I have two examples of the 'memory muscle' part. First was at work in the prison reception center. One of the simple tasks we had to do was ready a patients chart once they saw the doc and had a medical classification. We'd pick up the chart, turn it to the back and see the doctor's classification. We'd then open the chart to a specific page and make sure we had two signed sheets. We'd then go into the electronic chart and make sure the doctor put in what they needed to (just looking at two sentences they added). We'd then open up our own electronic chart documentation and repeat all of those things; say that the patient was cleared by the doctor to whatever level he was cleared to, that he signed the sheets, that he had had the tests he needed and had passed the doctors exam. Easy-Peasy Lemon-Squeezy. The whole process took all of forty five seconds. When I was experiencing the confused thoughts though, I'd get lost. I'd turn the chart over and see the the doctor cleared the patient to a 001. I'd open up the chart and forget what page I needed to go to. I'd eventually figure it out, but I'd forgotten the clearance code and had to look at the back of the chart again. I'd then forget that I'd already checked in the chart and would again go to that page. I'd go to open up the electronic chart and forget what patient I was looking at, so I'd pick up the chart to get his number.... and then forget what I was doing, turn the chart over, and get his clearance code again. It would take me five to six minutes to get a single patient cleared. And it's not like I was getting a 100% success rate as I'd mess it up and chart the wrong thing. Another more simple example is my shower. Under normal states prepping for my shower is this: step into the bathroom and lay down my clothes, turn on the fan, turn on the smart speaker, pull the shower matt off the shower rod and place it on the floor, pull the shower curtain aside and turn the shower on to full heat facing the shower wall (so it doesn't spray everywhere), disrobe, step into the shower while avoiding the quickly heating up water, turn the water temp down about 30% to where I know it will be warm but not hot, pull the smart speaker in and have it play some music ("Hey Google, shuffle playlist Shower Power"), close the curtain, check the temp of the water with my hand, turn the showerhead so I'm under it and get to cleaning. I don't have to think one little bit to do this as I do it every day. But while I'm experiencing confused thoughts, I can mess up any of these steps. I've forgotten the fan and/or the speaker. I've turned the water on without moving the shower mat out of the way (soaking it). I've turned the water on without turning the head to the wall, soaking the floor. Worst of all, I've forgotten to turn the temp of the water down or check it, then turned the scalding hot water onto my chest. I've literally burned myself with scalding hot water because I wasn't thinking clearly.
The confused thoughts are probably the most scary for me. I'm in a job that I have to think clearly, both as a manger and as a nurse. I can honestly hurt someone with a bad decision.
Now, most migraines have those three symptoms. Other symptoms I have are sound sensitivity (much like light sensitivity but involving loud sharp noises), neck pain, lack of appetite (bad when I'm taking insulin!), slight nausea (I've never had severe nausea with a migraine), and general muscle aches. I experience one or more of these symptoms about every other migraine.
But I want to emphasize, every single migraine is its own event with its own severity and its own symptoms. I had one where I had the light sensitivity, the sound sensitivity, the confused thoughts, the nausea, and the neck pain... but no headache whatsoever.
My post-drome symptom is a non-migraine headache (generally just pain all over my head instead of the left sided migraine style pain), a sense of fatigue, and either a muted or elated mood. That last one is weird as they're truly opposite effects but neither is more prevalent than the other. Sometimes I feel 'down' after a migraine and other times I feel 'up'. Either way, it's another couple days until I feel normal.
Total, from pro-drome to post-drome my migraine can last three to four days. Most commonly, with an attack that lasts one day, it will go for three. Pro-drome, attack, post-drome. But I've had all of these stages last longer, including the attack lasting for up to four days. And then there's frequency.
I hinted around it above, but the frequency of my migraines has continued to increase ever since I was diagnosed. My average, just before I took the Botox, was 2 per week. That's an average as I sometimes will have no migraines in a week, and other times it feels like they just run right into each other, one after the other.
In addition to the frequency rising, the average severity is rising as well. I don't have a consistent way to rate how bad a migraine is as the symptoms vary to much. I could rate pain, but the confused thoughts are almost worse. The main way I rate a migraine is how much it affects my life. Mild ones while still feeling bad, don't prevent me from working. While I used to try to 'push through' moderate ones I now accept that I can't work through them. I can technically work but the combination of the headache, light sensitivity, and sound sensitivity, make me really slow and the thought confusion worries me. And then there are the severe ones where I am honestly just barely getting through. A dark quiet room with Tylenol, Motrin, and Nurtec on board will still make me wish for death. I'm exaggerating as I don't become suicidal... but it's not a large exaggeration.
To get over a migraine... well, I don't know what cures them. They used to last a day, but now about half of them are lasting two days. Sleep seems to be the biggest cure, but obviously if they're lasting multiple days sleep is not the end answer. Tylenol and Motrin can reduce the headache portion by a little (say taking it down from a 7 to a 6) but does nothing for any of the other symptoms. I have Nurtec and it's an amazing drug, but as I stated above with its 1/4, 1/2, 1/4 ratios, it's not the answer. And whether I have the light/sound sensitivity or not, staying in a dark quiet room seems to always help.
And finally, the things that cause my migraine to come on are a combination of stress and weather. I say stress because I have far fewer migraines when away from work. Almost all of my stress is work related. But I've had migraines when off from work, on weekends, and even on vacations. And a lot of the time when there is a sharp quick change in barometric pressure, I'll get a migraine that day or the next. Think of those days where it goes from a clear blue sky in the morning to storms in the afternoon, when the temperature shifts by 20 degrees from one day to the next. Again, not all changes like that inspire a migraine, but many of my migraines occur near them. And yes, that includes plane rides.
Which finally bring me to what having migraines like this has done to my life. In all honesty, it's made me afraid. I missed enough work that I eventually ran out of sick time. That's a big no-no with the state and I got written up for it when I next had to call in 'sick'. As I didn't want to lose my job I was more or less forced into getting FMLA. It still uses my sick time and I still go into lost time because I don't have enough sick time, but FMLA says I can't get fired or even written up for it. But think about how much time this is taking from me. I get four hours of sick time each pay period. That's roughly one sick 'day' per month. I believe during one particularly good period I had banked twenty hours of sick time, but most of the time I'm dragging along the bottom of the barrel.
When I have a bad migraine I will often sit in my dark room in front of the computer and watch videos. I try not to watch anything new as I'll spend more than half of the time with my eyes averted from the screen. I'm also not thinking clearly so I don't want to miss something in a good show. I can't cap, I can't roleplay, I can't watch (new) TV or movies, I can't play games, I can't chat... I'm just a bump on a log waiting for the pain to stop.
I'm letting down those whom I work with. I've tried to explain it to them, but especially at this new job I'm just "that guy who calls in a lot". I'm always worried when I go on a driving vacation. What if I get a migraine the morning of a drive? I couldn't concentrate on driving enough to be safe, but I also wouldn't have a safe dark place to go. I'd have to get to a rest area of some sort and sit in the car suffering until a hotel opened up. I wouldn't say a migraine has truly ruined a vacation, but several have been affected by migraines. A couple trips to Dallas, New Orleans (both trips), San Francisco, Toronto, Detroit. I've had migraines on all of those trips.
And what if Botox isn't the answer? I have to wait at least nine months before we can say that with certainty. Another year of this. I can't express just how bad these have become. I think I'd trade these migraines for just about any other disease.
Well, I won't hope that you enjoyed this, but I will hope that it was informative. Putting this all down has been informative for me at least.
Thank you for reading it.
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