A year ago, during the peak of the Covid-19 pandemic I went into the Emergency room for 2 reasons, (1) I had been directly exposed to Covid-19 and was experiencing symptoms, (2) I had a migraine for a few days, and nothing was taking it away. The doctors immediately administered the Covid-19 PCR test, came back negative, and started me on an IV for the migraine cocktail, it all depends on the doctor what’s in the cocktail, but it’s magic it takes away the migraine and in a couple hours you’re a brand-new person. Immediately I was sent home, the next day the migraine came back. The migraine continued for 6 more days before I went to go see my primary doctor. He prescribed me Sumatriptan which for some reason didn’t do the trick. I then had a migraine for 10 more days and went back to my primary doctor.
He sent me directly to the ER because the migraine had gone on for too long and it had now risen my blood pressure. Because of the Covid outbreak, doctors were hesitant to admit me. This is where self-advocacy comes in, I had been dealing with the migraine for about 15 days at this point my primary care physician had told me not to leave the hospital without some sort of plan of care and this is exactly what I told the attending physician. Reluctantly he admitted me into the hospital.
For the next few days, he refused to run any tests on me and just said it was my blood pressure because of the Covid overflow I was put in the labor and delivery floor, I was treated by some of the best of nurses. This was still the peak of the pandemic we were all fully masked and instructed not to even touch patients. I had nurses sit with me all night because they knew how bad my pain was just to make sure my blood pressure would go down. The treatment I received from the nursing staff at that hospital was out of this world.
The weekend doctor came in and he was the one that informed me I had lesions on my brain that resembled a stroke. He ran all the tests necessary and more tests I asked for to make sure the stroke that I had suffered wasn’t going to cause any major risks. Turns out sometimes there are migraines that are so painful and lasts so long that cause lesions on the brain and sometimes it can be categorized as a stroke however, I had not suffered one.
I had been asking for a lumbar puncture, but the attending physician kept insisting the migraine was caused by my blood pressure and by sleep apnea, 2 conditions I do not have. This is the cause of fatphobia and gaslighting in medicine. After 15 days in the hospital, I was discharged I was sent to find a neurologist and found a mediocre neurologist and they ordered a lumbar puncture, and I was right I had excess cerebral fluid which is IIH. My neurologist just kept ordering steroids and more pain medications for my migraines. I ended up again in the emergency room with the same persisting migraine. I found another neurologist and he gave me another answer and said you’re having over pain medicated induced headaches I had to get off all my medications, but the only solution to cure my problem was to lose 100 pounds by having Gastric bypass surgery which in the state I was in was not possible, again I experience fatphobia instead of receiving actual help from a physician. I’m a complex case. I have many underlying health condition especially auto immune conditions that attack each other, and I need which ever doctor that is going to treat me to understand that.
I finally found a new neurologist through a friend at the university of Miami, and he had a cancellation. He knew exactly what was wrong with me. He confirmed the pain medication induced migraines, he had told me that since I had been dealing with this since early July and we were now in late August, and I had been taking heavy pain medications every single day since then I had to detox. He put me on a regimen for it, he even put me on an exercise regimen that was doable for my inflammatory arthritis and fibromyalgia. He put me on an eating schedule, a sleep schedule, a schedule for everything, by the time I saw him 6 weeks later my headaches were gone. I did not have to go on any new steroids on any new treatments. He then put me on a new regimen for treatment.
What is IIH? Idiopathic intracranial hypertension is a disorder related to high pressure in the brain. It causes signs and symptoms of a brain tumor. It is also sometimes called pseudotumor cerebri or benign intracranial hypertension. The fluid that surrounds the spinal cord and brain is called cerebrospinal fluid or CSF. 95% of patients with IIH if not treated properly have it turn into papilledema. Which is swelling of the optic nerves, and this can cause the patient to turn blind. I am part of the 5% which will never cause the optic nerve to swell.
Symptoms: Symptoms can include blurred vison, nausea, vomiting, ringing of the ears, headache dizziness. My symptoms were as daily migraine that would worsen in the evening, I couldn’t see out of my peripheral vision, when the attack would get worse, I felt like the back of my head was full of water and I would hear a whooshing in my ears, before an attack hits I would have ringing in my ears (tinnitus)
My Experience with Treatment: The first drug that was given to me was a diuretic to reduce the production of spinal fluid. I was on that drug for a few months several times a day. Then my doctors would lower the dosage. Until I was taken off of it completely. I’m very grateful my body responded so well to this drug because the next step would have been to install a shunt in your brain which I’ve heard from other friends that have this disease has its own set of complications. I am also on Topamax as a migraine preventative.
I still have migraine attacks not as regularly as before, but I still have them. I’m better equipped on how to handle them. I keep my rescue meds on deck just in case I need them. I’m more aware of my triggers such as loud music, loud noises, lots of people, and bright lights