Yes, I have a migraine, so I might kill you


All sorts of migraines exist.  Mine are centered in the left hemisphere in my frontal lobe (right side, in the front).  I have developed two different types of migraines now in that area.

One, which I’ve had since I was 8, is a burning, throbbing pain that expands over a wide portion of my frontal lobe and into other parts of my brain on the right side.  Symptoms of these include personality changes, depression, agitation, trouble speaking, difficulty finding words, impaired motor function, and vision issues.  I also go color blind when it happens.

The second is new.  It’s a stabbing throbbing pain that goes from my skull down to my eye ball.  Even my eyeball throbs with my heart beat.  Symptoms for it are slightly different.  I have trouble seeing out of my right eye when it happens.  My motor skills become impaired and I have personality changes.  No depression, but I become extremely agitated.  I do not become color blind, I do not have trouble speaking or difficulty finding words and it doesn’t burn.  I also have zero warning.

The first is an aura migraine.  Most of the time, I have 20 hours or so to start treating it before the actual migraine hits.  The second just hits.  One minute I’m fine, the next it feels like I have a very long, very wide knife sticking out of my head and the tip is trying to make my eyeball explode from its socket.  Even my hair seems to hurt with this migraine.  I have no idea what kind of migraine it is.  It is very responsive to migraine medicine, in the sense that when I take the meds, it goes away.  As they wear off, it comes back.  And for the record, the migraine meds do not last until the next dose.  So I spend a lot of time just counting the minutes (or hours) until I can take another pill.

Now, when I was younger, the migraine would hit, I’d spend some time throwing up and then I’d pass out.  I no longer do that, although, most of the time, I wish I did.  I had a neurologist once explain that it was tolerance.  I had migraines so frequently, that I was becoming tolerant of the pain.  He also told me it was a very bad sign, since I was in my late teens when it happened.

Eighteen years later, I agree.  I become tolerant of migraine meds very quickly.  My migraines last much longer because I no longer pass out and instead have insomnia with them.  And the only sure-fire way to knock them are all controlled substances.

DHE works incredibly well on my migraines.  I used to get self inject, but they are no longer allowed to distribute DHE in that form.  Now, they require hospitalization and that is about as much fun as putting your head in a blender.  I’ll suffer at home for months before I agree to that ever again.

The other is narcotics.  I miss Darvocet.  It worked well for my migraines and since it was very low on the list of narcotics, doctors were more likely to prescribe it.  Tylenol 3 is a joke.  Codeine absolutely doesn’t help.  Vicodin does help, but not a lot.  I have to start moving into the realm of serious narcotics; Percocet, Demerol, oxymorphine, morphine, and oxycontin all work well, to varying degrees.  Unfortunately, I have enough of these hard to knock migraines that I look like a drug seeking patient.  I know because they have started trying to find alternative meds to put in the migraine cocktail at the ER.  It used to be they filled it with Demerol, Toradol, and Phenergan.  Now, they want to give me just Toradol and Phenergan.  By itself, Toradol doesn’t work.  I wish like hell it did.  I’d ask for a script for it and just pop the pills at home as need be.  Since it’s a nerve medication and not a narcotic, a doctor would be more likely to give me a home prescription of Toradol or even Tramadol.

As a chronic migraine sufferer, you’d think the medical community would be a little more understanding of my condition.  I’m not a drug seeker, I actually hate the way narcotics make me feel (I don’t ever get drunk for the same reason).  I get that we don’t actually understand migraines very well, but I also know that a lot of chronic migraine sufferers have seriously considered suicide as an alternative to the pain.  I’m one of them.  When you enter week three or four or six of a migraine and nothing is helping and no one wants to help you, unless you are admitted to the hospital, it becomes a situation of hopelessness.  You feel like the pain is never going to leave.  You feel as if no one cares.  You feel as if you are losing a part of yourself.

The problem with admission to the hospital for a migraine is that it is at least 72 hours.  That’s 72 hours where you mostly have a migraine, despite the narcotic drip and DHE.  They don’t let you sleep.  They require you to notify them if you need to get up and go to the bathroom, for a woman with Sjogren’s, this means I have to hit that buzzer a lot because I’m always thirsty, so I pee often.  They feed you a liquid diet; so cream of celery soup, cream of wheat cereal, etc,; which does provide you with nutrients, but since I’m no longer throwing my guts up or nauseated with my migraines, I want actual food.  They wake you up during the day and night, if you can manage to fall asleep at all.  The IV drip is horrendous, I usually blow veins.  I have Sjogren’s, I’m plenty hydrated, pushing fluids causes me to swell up, my fingers become vienna sausages and me feet look clubbed.  Not to mention the 22 pounds I gained last time just from fluid retention because they were pushing fluids and I was still drinking my 150 ounces of fluid a day.  And most hospitals do not give migraine patients a private room.

My last roommate was an elderly woman with emphysema and was partially deaf.  She didn’t understand migraines and kept telling me that a headache should not require hsopitalization.  She kept the TV volume really loud and every time she coughed, I wanted to slit her throat because it made my head feel like it was exploding.  The time before that, my roommate was a woman in her 40s who was in there for a broken leg.  I began to keep track of her visitors because there was always people there.  From seven in the morning until nine at night, there was at least two people on her side.  At one point, she had six visitors on her side.  That curtain does not block out sound, especially when the roommate cackled like a crow.  After the visitors left, she wanted to talk to me.  When the nurse came in and explained I had a migraine and probably didn’t want to talk, she turned on the TV to infomercials and then fell asleep with it on.  When I turned it off, she woke up and yelled at me because she was watching it.  However, nothing tops my first roommate.  I’m sure she told me why she was there.  She told me everything else about herself, including her fucking shoe size.  The woman would not shut up.  When my parents or best friend would stop to check up on me, she would talk to them.  At one point, she began singing!  They moved me into a different room on day 2 because I told the nurse if they didn’t drug her, I was going to remove her vocal cords.  The roommate after her was much quieter, a cancer patient that spent most of the next two days throwing up.  How do they expect migraine patients to get better when they are being bombarded by stimuli they can’t control because of a roommate?  How is a hospital a better environment for migraine relief than being at home, where the sufferer does have some control over the stimuli?

Thanks, but no thanks.  That kind of treatment is liable to make me a murderer.  Especially since I do become hostile and aggressive anyway because of a migraine.  (We believe that my personality is deeply affected, because my migraines are centered in the frontal lobe which controls a large part of personality.)  I’d rather suffer at home than be tortured at a hospital.

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2 Comments

  1. You’ve had horrible experiences in the hospital and I can totally understand why you don’t want to stay there – they should have given you a private room where the stimuli (like light and sound) could be controlled. It is rather stupid of them to stick you in a room with other people – especially the kind of people they have stuck you with. Total doctor and hospital fail!

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    • Unfortunately, I don’t think I’m the only migraine sufferer to have this happen. One of the women in my PCOS group was hospitalized for a migraine and her roommate had refused to stop talking on her cell phone. She was working, from her hospital bed, including three conference calls and no headphones.

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