My eyes hurt. I feel like I'm in the middle of a sea of cotton. But the cotton is squeezing my head. This is when my 30-minute window begins. 30 minutes to get home. To set up my space. Bedding, medication, water, bucket, snacks, pillows, more pillows, sleep mask, tissues, charging cables. I'm quite experienced at this.
I don't remember when it started. These pain attacks. That's what I eventually called them. Once my 30-minute window was up, I could only sit in one position. As still as possible. No getting up, no lying down, no leaning. Any change in elevation exacerbated the headache and pressure in my head beyond measure. 6-18 hours. That's how long a pain attack usually lasted. I hoped every time that it wouldn't be so bad this time, that I could make it without calling the doctor. If I had to call, I often needed a huge boost of strength.
The call to an on-call doctor or emergency service usually went like this: Migraine? Headache. Ah, I see. Why don't you call the on-call doctor again? I tried to explain. I have been operated on multiple times for head and spine issues. No, I can't get up. No, I can't move. Please, I need a doctor to give me a pain infusion. Will it help? Hmm. Maybe. But it at least sometimes dulls the pain. I felt like a drug addict begging for an infusion. In reality, I called the emergency doctor at most once or twice a year. And by that point, it was often so critically bad that I still can't believe how I was treated.
Last year—I had already been enduring the pain attack for several hours. I tried to breathe through it, suppressed the crying from the pain because the tension and stress made it worse. But it was no longer possible. My head felt like it was going to explode, the pressure was almost indescribable. How could this be? What could it be? I called the emergency service. After a 15-minute discussion about why I didn’t want to call an on-call doctor (who often takes 4 hours to arrive), and the insistence on sending only the paramedics (who cannot give infusions without taking me to the hospital), and explaining that I couldn’t get up immediately. At least they sent the paramedics over.
The doorbell rang. I tried to get to the door as quickly as I could, knowing I would likely collapse again due to the change in elevation. At the apartment door, they gathered me up and I managed to get back onto the couch, into my position.
I explained my situation, showed them my well-organized folder with medical reports, with a summary on top. I showed them the emergency app on my phone with my medication details. At that point during the attack, I had such severe visual disturbances that I was operating the app blindly, as usual.
The paramedics’ response: We cannot give you an infusion without taking you with us. Oh, what a surprise. Who would have thought. Another 10 minutes of discussion about whether they could please call an emergency doctor. They refused and called an on-call doctor instead. To my surprise, he arrived within 10 minutes. Without speaking to me directly, I heard him standing in the doorway say, "She gets nothing from me." I cried. I cried from pain, from despair. Why is no one helping me?
Then the paramedics called the emergency doctor. Fortunately, he arrived very quickly and was very kind, so there were no further arguments. I received a strong pain infusion. Meanwhile, seven people were now standing in my living room. But I couldn’t see them anymore; due to the visual disturbances, I had my eyes closed and the pain enveloped me in a fog. I heard the on-call doctor was still there and suddenly spoke to me: "Who have you called? Do you even know what this costs?"
Today I know: These pain attacks were not migraines. They were caused by elevated intracranial pressure. Such a condition can be a ticking time bomb. My gut feeling was right. Unfortunately, I couldn’t find anyone to listen to my gut feeling and help me for 25 years. Until this year. A doctor who took on the complexity of my conditions. I’ve known him for 4 years now and am simply grateful. I now have a VP-shunt. Will it help? Will it keep the attacks away? I can only wait and see. But I am grateful. I am not crazy.
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