I’ve had headaches for as long as I can remember. My mom thought it was probably just my vision, because I’d been wearing glasses since the first grade with my eyesight constantly declining. And honestly, that probably was part of the problem. I can first remember them being particularly bad in the fourth grade, when I’d ride the school bus home in the afternoon. It was hot in Texas up until November sometimes and I was the last kid off the bus, so an hour of riding with the windows down on dirt roads did not help me. I’d come home nearly every afternoon with a headache, and my mom would explain it away as growing pains or my eyes. I think that maybe she thought I was becoming a hypochondriac because of how often I complained, but it hurt. One particular incident, when I was maybe 13, we’d been at the pool in Gainesville swimming during the summer and for some reason as we were driving home that afternoon I was hit with one of the worst headaches I remember of my teens. We were driving southbound on I-35 and the sun was directly above me, and the pain was unimaginable. I thought I was dying. Looking back now that was probably the first migraine I ever remember having, though I didn’t know it at the time.
When you have headaches, at first you don’t think to document any sort of pattern. I was a kid and headaches were my “normal”. As I got older they continued and doctors thought that maybe my sinuses were to blame, along with my eyes still. It wasn’t until 2004 that I was first diagnosed with migraines. My doctor at the time thought they were probably stress related, as I’d been recently divorced, working full-time an hour from home and I was barely 19. She gave me a prescription for Relpax and told me to relax. Taking that medication was an experience that I will never forget. I’d gotten home early and was going to cook pork chops for my mom and stepdad for dinner. It probably wasn’t 30 minutes after I’d taken it, as I was putting the pan on the stove, I felt like someone had dropped a 100lb weight on my head. My head was crushing my neck into my body and I couldn’t even stand up. Somehow I managed to make it to my bedroom where I lay crying for the next two hours. When my mom came home finally, I don’t think she fully understood the extent of the pain I was in, more from the medicine than the migraine itself. She’s always been the tough love type and as a parent now I understand that, but it’s frustrating when they don’t believe you. Just ask her about the time I broke my fingers in 2nd grade.
Over the next two years the migraines came and went, not very frequently but I seemed to always have a headache of some sort. After a really bad bout of sinus infections my primary care doctor sent me to see a neurologist. As the headaches had worsened I’d been having a lot of difficulty sleeping, so he thought maybe that was the issue. A sleep study was scheduled in June 2006 and it was found I woke up around 24 times every hour. No wonder I was exhausted! Turns out that I had sleep apnea as a result of my tonsils crowding my throat, a problem which I’d had since I was very young and my mother lobbied to have them taken out as a kid but no doctor would. So I had them out at 22, in a children’s hospital, complete with puppy feet socks and an orange Popsicle. To be truthful that was probably the best and worst experience of my life. Being the optimist I am I wrongly assumed I’d be back at work in a week; in fact, it was 22 days of sheer hell. Sleeping was impossible because my throat would dry out, and I had nothing but liquid hydrocodone and water for about 17 days, as well as excruciating headaches. And somehow I only lost 15lbs . . .
Having my tonsillectomy seemed to help for a while, probably six months. Then at the end of 2006, things went from bad to worse. For some reason the migraines came back with a vengeance, worse than ever before. My neurologist decided that it was time for a preventative medicine and started me on Topamax. Now, I’d heard horror stories of this stuff but given the small dosage I was on really didn’t think it would bother me. WRONG. Within a week, I was stuttering and forgetful; by the end of a month, I was illiterate. Seriously, my 141 IQ dropped about 40 points. Terrified I was going to lose my job I quit taking the medicine and asked for something else. That’s when I got to try Atenolol, a beta blocker that is commonly used for patients with high blood pressure. Since my pressure was already low by nature they were careful of how much I took, and at my highest took about 150mg a day until my blood pressure was dropping to around 90/60 and I was feeling woozy all the time. All in all the Atenolol worked for well over a year and then quit suddenly when my blood pressure got so low.
It is important to note that I was living the typical lifestyle of a 22 year old kid in Dallas at that time. I had started working for a band called Exit 380, I was out late and partying and drinking on the weekends and paying for it later. There is no doubt that this attributed to my headaches at the time, but I was either ignorant of the fact or just ignored it entirely. My guess is the latter.
Just before the summer of 2008 the neurologist decided to try me on a drug called Zonegran, which is in the same family as Topamax but with less side effects. Gradually my dosage increased over the months until the point I was taking 200mg a day because the headaches had returned, presumably because I’d started taking birth control again. During this time I met my husband and in August 2009 I quit taking the medication and the birth control so that we could clear my system entirely and try to have a baby. Making sure I avoided all possible triggers, I took vitamins daily and only had a few migraines through the end of the year. I had quit drinking almost entirely after a really bad case of pneumonia in January 2009 and had a glass of wine maybe every three months. Our wedding was planned for January 18, 2010 and I really had no stress in my life at all; I was blessed and blissful.
Whatever it is about the first of the year I couldn’t tell you, but it hates me. On January 3rd I’d planned a really nice meal for my husband of grilled lamb shoulder, steamed carrots and homemade sparkling juice. Within 15 minutes of eating this meal I had a severe migraine and I knew exactly why – carrots. One of my favorite vegetables and every time I eat them I pay for it, especially if they’re cooked. I grabbed my handy icepack from the freezer and retreated to the bedroom as my husband put our son to bed. Icepacks always seem to numb the pain, or just replace the pain with a different pain, but either way we proceeded to do what married people do . . . and that’s when I had the strangest headache onset I’d had for the second time in a week. It was like I’d been hit in the head with a hammer, instantly debilitating and collapsing me to the ground.
The first time this happened, my husband tried to rush me to the emergency room but I refused. After lying on my back for about 15 minutes and drinking some tea the pain seemed to subside in intensity some, but lasted for three full days. This second time set off the pattern I’m currently in. That was January 3rd, today is March 5th – and I’ve had a headache of migraine intensity every single day for these past eight weeks. Pain has become my new “normal”. I don’t know a day without a searing headache. Of course after that second incident I called up my neurologist immediately and he scheduled me for an MRA, a type of MRI that looks at the veins in your brain and specifically aneurysms. I was experiencing what was called a coital headache but they usually went away in a couple of hours, not a couple of days, and he understood that I didn’t want to be in this pain during my honeymoon. He had me taking Darvocet, Naproxen and Zofran since I’d quit taking the Zonegran to manage the pain and nausea and none of that was helping, so he gave me a drug called Maxalt that dissolved under your tongue. I affectionately called it my “I Don’t Give a Damn” drug because that’s how I felt, I could care less about anything at that point, but I still had the headache. To be truthful I was a little scared, not because I ever thought I had anything wrong with my brain but because I might be stuck with this pain.
See, that’s the thing – never once since this started did I think I had something wrong with my head. There were no symptoms of a tumor/aneurysm/clot ever, just severe pressure that resulting in stabbing, aching pain. And I was right all along. My biggest frustration with this neurologist is that all he wanted to do was medicate me and not address the underlying problems. It got so bad at one point that my husband really did have to take me to the emergency room on the night of February 9th. Light was bothering me, which was a new thing, and they gave me morphine and phenergan which did nothing. NOTHING. That stuff knocked me OUT after my knee surgery – and coincidently that’s when they decided I was allergic to the hydrocodone after it gave me a migraine that left me useless for two days. I managed to get in with the neurologist two days later and I left there in hysterics, during the biggest snowstorm Dallas has ever seen. He was two hours late seeing me, and told me I needed to try this nasal spray called Migranal three times a day for the next three days, as well as a steroid pack. This cost $100 and I was at my wit’s end. On my way home I called Texas Neurology and they got me in with Dr. Herzog, the headache specialist, for Tuesday February 23rd. I was elated.
Migranal was not my friend. Initially it made the pain double every time I took it, and after day two just quit working entirely. I was working at the store that day and happened to read an article about a young girl who’d just won Grand Champion at the stock show in Fort Worth, and about how she almost didn’t get to compete because of debilitating headaches. Immediately I grabbed up the paper and read the article, feeling a strange connection to this girl I didn’t know but related to on so many levels. Never did the article reveal what she suffered from but we had identical symptoms so to Google I went. After about four hours of exhaustive searching, I found what I was looking for, a possible diagnosis. I sat in tears in the store office, reading through this website dedicated to the disorder and frantically calling my husband to tell him. This could be it, and I educated myself as much as possible before my appointment with Dr. Herzog.
Dr. Herzog reminded me a lot of my husband, fast talker, thorough and to the point. I had gone in there armed with my MRA, MRI, CT and medical records, a list of symptoms over the years and questions to ask. He literally read through my chart and asked me two questions, the latter being about my pain level. Explaining to him that it seemed like the pain was a result of the pressure, and that it was always the worst during the morning and right before I went to sleep, and that no drugs were helping, the doctor apparently read my mind.
“Have you ever heard of pseudotumor cerebri?”
I was so relieved I thought I might cry. That was exactly what I was going to ask him about. He scheduled me for an MRV, another type of MRI, as well as a lumbar puncture and put me on a Frova bridge – I take the medicine twice a day for 10 days. When I’d asked my prior neurologist about this test, he’d outright refused, saying that it was a last ditch effort that would require me to be in the hospital for three days and on intravenous pain meds. Not so, actually. Since my MRV was clear, as I knew it would be, I’ll have a lumbar puncture, aka spinal tap, on Thursday March 11th. Yes, I will have to be in the hospital for three hours, and lie flat for 24 hours after that, but the procedure will only take 15 minutes. Even better, they’ll tell me my pressure reading before I leave and as long as it’s less than 200mm/H20 then it’s likely I don’t have the disorder. Even if I do, it’s a diagnosis and I’m happy to have one that can lead to a proper treatment plan.
So today is my last day on the Frova. I’ve seen no change except that I can’t put sentences together properly or call things by their proper names, basically I’m really confused. It’s been a constant battle that’s just been getting worse over the last couple of months but I’m sticking it out, hoping for answers. I have found such great comfort and knowledge with the Intracranial Hypertension Research Foundation and am just looking forward to the end of this saga. I know my family, and my work, are as well. Hopefully I’ll be back with news next week, but I don’t see any of it being bad news; any diagnosis to me at this point is good news.
Thank you to everyone who has said an extra prayer for me, and to the former coworker who has been a great source of hope without realizing it, my friend in the headache gallery.
Love, KC
So, the good news - my opening intracranial pressure was 360mm/H20. The normal acceptable rate is 200mm/H20, and anything over 250mm/H20 is considered high. They drained out 160mm to make my levels normal. My levels were well over what is considered high and just confirms what I've thought all along - Idopathic Intracranial Hypertension. Doesn't sound like good news? Well I think it is, because it means I have a diagnosis. To me, that is a blessing.
