Miss Vickie
Well-Known Member
Hi all,
I thought I'd share with you a challenge I've been going through, just in case my experience can help someone, and they can seek early treatment.
On January 7, while adjusting phototherapy lights at work, I got a headache. Figuring it to be a migraine triggered by staring at the light, I took Motrin, then Maxalt, and it mostly went away but some of it lingered. The headache continued, day after day, through the month of January. Motrin helped, but it never entirely went away. Figuring it was stress from working and being in school full time, I saw my chiropractor and massage therapist. Wondering if it was my TMJ problems, I religiously wore my night guard. I visited my acupuncturist. In desperation I saw my "regular doc" who thought I had migraines triggered by neck tension and he did trigger point injections into the base of my skull. Everything helped for a little while, but I'd be back with a headache within hours.
Then, a couple weeks ago, I woke in the middle of the night with horrible nausea and a thunderclap headache. Knowing that when you have "the worst headache of your life" you need to get to the doctor, off to the ER I went. My blood pressure was sky high, and they started looking at whether this was a migraine or something more dire. A stroke? Aneurysm? Vessel malformation? Meningitis? I had a CT, CT with contrast, and a lumbar puncture ("spinal tap"). Everything was normal... except when they did the LP the pressure was high, which is a diagnostic indicator of pseudotumor cerebri, also called idiopathic intracranial hypertension.
They gave me lots of IV meds and I saw a neurosurgeon who suggested (quite strongly) that I have an cranial angiogram to truly rule out a bleed or aneurysm. I spent about 13 hours in the ER, and went home, waiting for the call to schedule the angiogram. The headache settled back down to its usual annoying self and I worked the rest of the week at clinicals.
Friday I had my angiogram and it went great. My vessels are "pristine" (booyah! Take that, fat haters!) and while it was a weird feeling, having a catheter snaking its way through my body squirting hot dye into my head, it wasn't painful.
My headache started worsening after the procedure, but I figured it was lack of caffeine and Motrin. I was offered IV pain meds, but I refused. I went home, took Motrin and tried to sleep it off. But it got worse, and worse, and worse. I became confused, and my vision started failing. Sure that I was having a stroke, I was doing neuro checks on myself (don't laugh!) and had Burtimus drive me to the ER. They called the neuro who said it wasn't the angiogram but to give me lots of good IV meds to settle me down. They gave me the same stuff I had before -- dilaudid, fentanyl, zofran -- and after awhile the headache went away. Other than my vision being very very blurry, my neuro checks checked out. I went home wit ha prescription for another migraine medicine (Maxalt started making my heart feel like it was going to explode so THAT'S a bad drug for me).
I freaked out all night long, obsessively checking my vision, unable to text my friends, watch TV, everything was a big blur. Saturday I stayed in bed, afraid to move for fear of worsening my headache; it started to worsen at bedtime so I took the migraine medication and hoped it would work. Sunday, I woke up with another headache to beat the band and back to the ER we went. My vision was better (not perfect but I could see enough to watch a movie) but my head was hurting more. More IV meds, different migraine medication, and home we went.
I finally got in with a nurse practitioner who specializes in neurology on Tuesday morning. My vision was back by this time but the minor headaches were still there. She did the full on neuro exam, which was normal, and said that I have both migraines AND this thing called pseudotumor cerebri. Or, as she said, "You have ticks AND fleas!"
Pseudotumor cerebri is a disease that occurs spontaneously (or it can be secondary to another condition) where the body doesn't shed CSF so it builds up around the brain. This "squishes" the brain and causes headaches, and presses on the back of the eye and can cause permanent blindness. They don't know why this happens, but risk factors include being a woman in her 40's, being somewhat plump, having a history of anemia, and having used steroids and birth control pills.
The symptoms include headache worse in the morning, pain behind the eyes, whooshing sound in the ears or tinnitus, seeing "floaters", and sometimes confusion. Treatment includes a medicine called Diamox, which is a diuretic that specializes in pulling fluid off the brain and decreases eye pressure such as found in glaucoma. It has some interesting side effects -- pins and needles in the hands and feet, and worse, carbonated drinks all taste like rocket fuel. It's quite remarkable. This drug has done what nothing else could do -- gotten me over my Diet Coke addiction.
If this medication doesn't work (and I'm still having symptoms), other options include putting a shunt in my brain, allowing the fluid to drain into my belly, and an optic nerve sheath fenestration which I think has something to do with putting a HOLE in the back of my EYE. I'm still waiting to get in to see the neuro ophthalmologist to find out more about the prognosis for my vision.
We're still working on my treatment plan, and naturally, since I'm a nurse, I have to be especially complicated.
Treating both migraines and pseudotumor isn't easy, but my provider is super smart and I'm hopeful that I can get out of pain soon. And fortunately my instructors at school and my boss at work are being really patient with me. The other day I had to lie down in a dark room for a bit while I was at work because the pain was so bad, which helped tremendously. My coworkers covered my patients for 30 minutes, and I was able to work the rest of the shift.
So anyhow, if you get a headache that doesn't go away, worse in morning, and you get any weird visual or auditory stuff going on, think about your pal Miss Vickie and remember the disease with the funny name. The more I talk to people the more people I find who have this! The good news is that it can spontaneously go away, too, so if you can safeguard your vision and hang in there, there's pretty good chance that you'll be okay.
I thought I'd share with you a challenge I've been going through, just in case my experience can help someone, and they can seek early treatment.
On January 7, while adjusting phototherapy lights at work, I got a headache. Figuring it to be a migraine triggered by staring at the light, I took Motrin, then Maxalt, and it mostly went away but some of it lingered. The headache continued, day after day, through the month of January. Motrin helped, but it never entirely went away. Figuring it was stress from working and being in school full time, I saw my chiropractor and massage therapist. Wondering if it was my TMJ problems, I religiously wore my night guard. I visited my acupuncturist. In desperation I saw my "regular doc" who thought I had migraines triggered by neck tension and he did trigger point injections into the base of my skull. Everything helped for a little while, but I'd be back with a headache within hours.
Then, a couple weeks ago, I woke in the middle of the night with horrible nausea and a thunderclap headache. Knowing that when you have "the worst headache of your life" you need to get to the doctor, off to the ER I went. My blood pressure was sky high, and they started looking at whether this was a migraine or something more dire. A stroke? Aneurysm? Vessel malformation? Meningitis? I had a CT, CT with contrast, and a lumbar puncture ("spinal tap"). Everything was normal... except when they did the LP the pressure was high, which is a diagnostic indicator of pseudotumor cerebri, also called idiopathic intracranial hypertension.
They gave me lots of IV meds and I saw a neurosurgeon who suggested (quite strongly) that I have an cranial angiogram to truly rule out a bleed or aneurysm. I spent about 13 hours in the ER, and went home, waiting for the call to schedule the angiogram. The headache settled back down to its usual annoying self and I worked the rest of the week at clinicals.
Friday I had my angiogram and it went great. My vessels are "pristine" (booyah! Take that, fat haters!) and while it was a weird feeling, having a catheter snaking its way through my body squirting hot dye into my head, it wasn't painful.
My headache started worsening after the procedure, but I figured it was lack of caffeine and Motrin. I was offered IV pain meds, but I refused. I went home, took Motrin and tried to sleep it off. But it got worse, and worse, and worse. I became confused, and my vision started failing. Sure that I was having a stroke, I was doing neuro checks on myself (don't laugh!) and had Burtimus drive me to the ER. They called the neuro who said it wasn't the angiogram but to give me lots of good IV meds to settle me down. They gave me the same stuff I had before -- dilaudid, fentanyl, zofran -- and after awhile the headache went away. Other than my vision being very very blurry, my neuro checks checked out. I went home wit ha prescription for another migraine medicine (Maxalt started making my heart feel like it was going to explode so THAT'S a bad drug for me).
I freaked out all night long, obsessively checking my vision, unable to text my friends, watch TV, everything was a big blur. Saturday I stayed in bed, afraid to move for fear of worsening my headache; it started to worsen at bedtime so I took the migraine medication and hoped it would work. Sunday, I woke up with another headache to beat the band and back to the ER we went. My vision was better (not perfect but I could see enough to watch a movie) but my head was hurting more. More IV meds, different migraine medication, and home we went.
I finally got in with a nurse practitioner who specializes in neurology on Tuesday morning. My vision was back by this time but the minor headaches were still there. She did the full on neuro exam, which was normal, and said that I have both migraines AND this thing called pseudotumor cerebri. Or, as she said, "You have ticks AND fleas!"
Pseudotumor cerebri is a disease that occurs spontaneously (or it can be secondary to another condition) where the body doesn't shed CSF so it builds up around the brain. This "squishes" the brain and causes headaches, and presses on the back of the eye and can cause permanent blindness. They don't know why this happens, but risk factors include being a woman in her 40's, being somewhat plump, having a history of anemia, and having used steroids and birth control pills.
The symptoms include headache worse in the morning, pain behind the eyes, whooshing sound in the ears or tinnitus, seeing "floaters", and sometimes confusion. Treatment includes a medicine called Diamox, which is a diuretic that specializes in pulling fluid off the brain and decreases eye pressure such as found in glaucoma. It has some interesting side effects -- pins and needles in the hands and feet, and worse, carbonated drinks all taste like rocket fuel. It's quite remarkable. This drug has done what nothing else could do -- gotten me over my Diet Coke addiction.
If this medication doesn't work (and I'm still having symptoms), other options include putting a shunt in my brain, allowing the fluid to drain into my belly, and an optic nerve sheath fenestration which I think has something to do with putting a HOLE in the back of my EYE. I'm still waiting to get in to see the neuro ophthalmologist to find out more about the prognosis for my vision.
We're still working on my treatment plan, and naturally, since I'm a nurse, I have to be especially complicated.
Treating both migraines and pseudotumor isn't easy, but my provider is super smart and I'm hopeful that I can get out of pain soon. And fortunately my instructors at school and my boss at work are being really patient with me. The other day I had to lie down in a dark room for a bit while I was at work because the pain was so bad, which helped tremendously. My coworkers covered my patients for 30 minutes, and I was able to work the rest of the shift.So anyhow, if you get a headache that doesn't go away, worse in morning, and you get any weird visual or auditory stuff going on, think about your pal Miss Vickie and remember the disease with the funny name.
The more I talk to people the more people I find who have this! The good news is that it can spontaneously go away, too, so if you can safeguard your vision and hang in there, there's pretty good chance that you'll be okay.
