Status Migrainosus

“I never knew that having a migraine for more than 72 hours was dangerous. I just thought it was painful and miserable. No doctor had ever mentioned danger at all… they just prescribed things  and sent me on my way.”

In the past ten months I haven’t really had a cold or gastrointestinal issues (for which I was treated two years ago) or even seasonal allergies. I have had pneumonia every year of my life until this year. Other than PCOS, and a history of IBS (which is only active when I have migraine issues, apparently) I’m perfectly healthy. Cholesterol is good. Iron levels are good. Spinal fluid came back with no issues. But something is wrong in my brain, and it took about six doctors to get to an answer… and a lot of tests and treatments and what felt like torture. It’s been proposed that lack of proper treatment and ignorance on the behalf of all those doctors led to what’s going on… that if my old neurologist had hospitalized me the first day he saw me and learned that I had had a migraine for four week… or that my old primary care doctor had done so weeks earlier… or that the emergency room I went to in July when I got the first migraine that was different than any other migraine I’d ever had had listened to me and used a DHE treatment on me… that I wouldn’t be going through what I am now because my brain wouldn’t have had a chance to get “stuck.”

But how could they know? Migraines are still this mysterious thing, and it took my headache specialist a few visits to realize that what I’m experiencing isn’t chronic migraines, but one single migraine that’s never ended… called Status Migrainosus. She had to Google the ICD-9 code because she has rarely treated the condition and everything she’s done has been an experiment. We literally sit together in the exam room at my appointments and she reads over studies that have been conducted on different migraine treatments. She will say things like, “this medication had a 23% success rate in a study conducted on 500 hundred migraine sufferers, that’s decent. Let’s do this.

I’ve had migraines for the majority of my life, and in my early twenties they got bad and started lasting 4-5 days at a  time. My neurologist then put me on Topamax and that “fixed” whatever was happening in my brain for a long time. I was weaned off of it years ago and I didn’t have severe migraines for a few years.

I never knew that having a migraine for more than 72 hours was dangerous. I just thought it was painful and miserable. No doctor had ever mentioned danger at all… they just prescribed things  and sent me on my way.

Now I tell everyone I talk to who has migraines to go to the doctor if they last longer than a day or so, or to get to the ER for abortive treatments. I don’t want a single other person to go through what I’m going through. I don’t want another patient to be ignored by their doctors or overmedicated by their doctors. I think that my condition was preventable to a point, and then that opportunity passed.

Now it’s a matter of finding the right chemical combination to get my brain to stop signaling that there is something wrong. It feels like a shot in the dark every single time we try something new. And every single time I say, “This is the one that will work. I can feel it.”

My only hope at this point is that I don’t run out of hope.

 

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9 thoughts on “Status Migrainosus

  1. I was very interested in this article–have you found any relief? My fifteen year old daughter is in the 6th week of a solid migraine–like you has been treated with everything under the sun with no relief and often nasty side effects (DHE). It is incredibly hard to stay positive and it is really wearing on her–she’s trying to lead as “normal” life as possible (Dr. directions) but after an hour of school she needs to come home. Just wanting it to end or at least have the pain start to subside.

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    • Well, first of all… if the doctor is telling her to try to lead a normal life and she’s in that much pain… it sounds like it’s time to shop for a new doctor. I haven’t been able to work for two years. When your brain is locked in that pain cycle it is sensitive and needs rest. Mind you, I’m not a physician. But I was put on strict bed rest. I’ve only gotten a few days at a time here and there, but I recommend finding a neurologist and finding someone who specializes in headaches and migraines. Have her track what she’s eating, the weather, her menstrual cycles, and her pain levels and symptoms. And try not to let her use pain medication every day because it can cause rebound headaches and prolong it. It’s dangerous to have migraine symptoms that long. It is okay to push back with the doctor… she isn’t living a normal life. Be strong. She deserves answers and so do you. The Jefferson Headache Center is a great place in Philadelphia if it is accessible to you.

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  2. wow, this comment is multifaceted. The easy stuff first. When helping someone, (therapy) one of the first things, is to help them to realize they can’t change everything, some things happen and you have to “go with the flow” To accept and learn to cope or deal (not with pain so much, but this too) More with life’s happenings. Some try to take on everything, and we can’t do this, It is overpowering and causes torment, usually in the form of anxiety and or depression. Migraines too though. But that is stress migraines, there are depression ones as well.

    The next thing, is to empower people by getting them to accept help. funny isn’t it? to empower by admitting help.. helps? An empowered person fights things alone often… but again, people that try to cope with matters alone are struggling needlessly, for help is there. Often family, for that is where a support group is. The question to ponder is, would you not help them? the answer is always, of course yes. So then the thing to do is accept help and not feel you burden those that offer the help. What ever that help is. for you would do the same. Interestingly enough, to keep going in your flow.. a drowning person is hard to save (I have done so) they fight your help so strongly. It takes time to accept help, time a drowning person doesn’t have, there is only time to panic and thrash, reasonable thoughts are not possible. hmmm, you have this time though. So keep waving your hand and grasp all the help offered with no guilt.

    no, not your fault. not at all. If you believe this truly too, it makes you stronger, not just words. Depression will tell you otherwise, remember it lies.

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  3. it is hard to not run out of hope with this kind of pain. You must be very strong. 🙂 I have had them run for months and stop, then go long periods without. Not usually intense ones though, They flair and spike during that period, some days may be bad but then it is more low level the next day, We truly know little about them. I think the problem is there are so many causes or triggers.

    scary to think you have had just the one, on going. But maybe, knowing this, the treatment won’t be far off? Keep hoping please.

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    • It seems like migraines are as unique as the brains that torment us with migraines.

      I have days when I hate everything… and where the depression and anxiety that come with being in constant pain overwhelm me. I think it’s important to live positively and be positive for my family. I feel personally responsible for the mental health states of my husband and son… which brings on a ton of guilt.

      My Psychologist is trying to help me understand that it is okay for me to need help, and to admit that there are things I can’t do right now. He says we all have times in our lives where we may seem helpless and like we’re drowning… but the best thing we can do is hold our hand above the surf so someone knows we need help.

      My arm gets tired.

      I heard an interesting story on NPR about drowning, and how drowning doesn’t look like we imagine it to look. When someone is drowning their body takes over and starts flapping unconsciously to try to keep the head above water. Life guards are trained to look for this particular response when they watch over pools and beaches.

      Drowning people aren’t holding their hands up to show everyone their drowning. Drowning people look to most people like someone playing in the water.

      I think about that frequently… that there is some programming in the human brain that recognizes drowning and takes over.

      That’s really powerful to me. It makes me realize that my body might know better than me in a lot of ways… and that it wants to live and thrive. It reminds me that, although I say my brain hates me, my body doesn’t want me to hurt… this isn’t some punishment. I don’t deserve what’s happening to me, and it isn’t my fault.

      Does that make sense at all?

      I know I’m not mentally healthy due to many factors throughout my life. Now that I know that my mind works differently than others, I feel empowered to finally embrace the benefits of therapy. Before… treatment didn’t fit. I rejected it because it felt off somehow. It felt like a farce.

      I think that there are many things in my life moving in the right direction, so I’m trying to focus on those things and not the pain and the loss that it brings. I don’t think it makes me strong per se. I just think it makes me an idealist hahaha.

      I enjoy our conversations, especially given your background and level of insight.

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