Navigating Through: A Journey from "It's a headache" to "Welcome to Migraines"
It's been 2 years since I've written a story for the site and I figured it's time to update some things.
My last story was actually published on the Facebook page and I felt really proud and very connected, knowing others felt the same things I did and knowing that i'm not alone in this.
I last wrote about finding people to connect with and finding those who will stand with you.
But first the facts.
I've had migraines now since I was 14. They really started with my period, as I've slowly learned. My memory isn't good at all, so I only know this through conversations with my mother. When I was 14, I got my period. I came home one day and went to the bathroom after feeling a lot of extra discharge in my underwear. Lo and behold a big dark red/brown stain. I had bled all day and had no idea. So that was it. I was a "woman" now. Big Whoop.
It was after that, when I started to get "headaches" I would wake up in the morning and feel really cloudy, kind of extra tired and my head would hurt. My mom was nice enough to let me stay home. It only lasted a couple of hours at first and i'd crawl into my mom's bed and watch TV. Weirdly, "Waterworld" was always on when I stayed home.
I only got the headaches every couple of months, they weren't much, just felt tired and sick to my stomach sometimes and mostly cloudy and a little pain in my head.
Then it started to change. I really remember my first Migraine when I was 18. I remember very vividly when I had my first real attack.
All my last year of high school I had been having "Headaches" I would wake up sick and tired and really depressed, cloudy and my head would hurt. Lights would hurt and i'd roll over and want to sleep. My first real attack happened in around May of 2008. I was in the Spring Musical, Beauty and the Beast. Just a bit role, but I was always at practice and I was stressed from classes and I was depressed. And then came the day that my head was killing me. It hurt so much I could barely see straight. I felt sick to my stomach, I didn't want to move or do anything.
I was gone from school for about a week. I had a pain phase and a hangover phase and I was tired and irritable. Mostly because I had been throwing.
The next time I remember an attack so vividly was when I went to my prom. That day, I had gotten my hair done, up and with all these curls going down my back. I was sure my cousin (who did my hair) had used an entire can of hair spray to keep it there. That day, I had also started my period, so I was having some cramps.
On the way to my then boyfriend's house for pictures, my head was killing me. I knew it was a migraine. By then I had heard the term. It hurt so bad but I was ignoring it, thinking it was because of my period because I often got headaches with my period. I finally begged a Midol off my mom but I didn't take it. I wasn't good at taking pills. I was able to ignore the pain until we were at the prom. I ate salad, drank really bad coke a cola, danced with my boyfriend and partied with my friends. But it started to get worse. I couldn't ignore it anymore and I had to beg my boyfriend to take me home.
He was sweet enough to take me straight to my house and even played Celtic Woman in the car so that I could relax. (it usually helped at that time.) Then he dropped me off. I had pulled my hair pins out and my mom said there was a trail from the car door to the front door in my driveway. I changed my dress into pajamas, didn't even shower and crawled into bed. My mom woke me up and moved me to the couch and helped me wash my hair and get cleaned up in the morning and then gave me an ice-pack. I proceeded to throw up for the next two days. That was my prom.
My mom was convinced I got a headache because of my period and because my hair was pulled back and up so tight to keep it nice. That's what I believed too.
When I entered college, the attacks became more frequent. Until I had turned 18, it was only once every couple of months, then once a month, then (because i was stressed) it became twice a month. And finally it was at several times a month. Maybe 3 or 4. And these were attacks that weren't being treated or regulated. It was me on the couch with a bowl on the floor in case I threw up. I had an ice-pack on my head and was barely conscious. I had the TV on for white noise because the sound of silence was so LOUD. I slept on the couch more than my bed.
If I was awake, I was throwing up, I wasn't talking, I wasn't eating, I wasn't drinking until my mom forced me sprite or water. I wasn't really all there the whole time. I never spent time with friends because a migraine could destroy the day and i'd have to be taken home. It was a nightmare and this whole time, everyone thought it was just a headache.
My dad got fed up with me "faking" or "milking" it. I couldn't contradict him because I was a hypochondriac when I was kid. But this was different. I had often complained of stomach aches as a child and so my childhood doctor thought I was just cramping up from gym class or something similar.
Finally I went to a doctor. One my mom found for me. She was kind and very nice, but she resigned within a year of talking to me. She never put me on anything or gave me anything. It was mostly talking and she told me to keep a journal.
I went undiagnosed for another year or so. I had been beginning to believe I had migraines. I kept hearing it on TV and my mom is a CNA so she mentioned it several times but didn't want to believe that's what it was. It was just "headaches" for that time.
Finally after a 4 day bought of throwing up in my bathroom, I grabbed the phone, brought it to the bathroom, called my doctor's office and requested a neurologist.
My second doctor to see me about these "Headaches" immediately called them migraines when I explained that's what I thought was going on. My mom went with me the first time and he put me on Nortriptyline. For 30 days I took these little nasty pills and NOTHING. My trial showed nothing. The second time I went, he told me to avoid triggers and didn't even look at my journal. My grandma went with me that time and she hated him as well. He was cold and unfeeling and didn't even talk to me. He barely looked at me and talked to me like I was 5. It was terrible.
The last time I went to him, I was by myself. I saw him for 15 minutes, waited 20 minutes in the lobby, another 10 in the actual room, saw him for 15 minutes in which he prescribed me Topomax and LEFT. I heard him outside the door say to his nurses. "Alright, i'm going home, bye." And that was it. I was DONE.
He had seen me for 15 minutes, barely talked to me and then told me he was putting me on a medication that had to be regulated, had to be taken in such a way that I could possible lose cognitive function, even have a seizure if I screwed it up. And he explained none of that. I was done with him.
I told my mom I wouldn't see him again and she found the doctor her coworker saw. He gave her coworker Botox injections for her migraines so obviously he was trained and knowledgeable. I would hope so because I wasn't going to let him stick a needle in my head unless he was!
I met with Dr. Singla for the first time and we talked! It felt like a miracle. At this point I was in my early 20's, possibly 21 I want to say.
He asked me all these preliminary questions that a new doctor would ask to get to know you. He made jokes and told me about his daughters and asked me about my symptoms and told me what each medication was that he was thinking about giving me. Blessed Be! I had met an actual human being who was trained and knew what he was talking about!
His last words at that appointment were, "Do you have a primary?" When I told him no, he went to type in the computer and said, "Okay, i'm your primary now." I had never had a primary before, my childhood doctor was the man who delivered me. He had taken care of all of my family and this Doctor was now my new primary. I was so happy.
With the neurologist, I had told him about the nausea, how severe it was, I was throwing up on the first day of the pain phase and not stopping until well after it was over. He had told me he didn't want to put me on too many medications at a time. When I was only taking one.
I told Dr. Singla and BOOM, I was on Zofran for nausea and what a miracle pill it is. I told him about the pain and he gave me Sumatriptan, or Imitrex tablets. He gave me 50mg to start with and told me to take them every time I thought I was going to have a migraine. I followed his advice and I felt so amazing to find something that worked! I had something for the nausea, I had something for the pain, and then he told me that he did want to start me on Topamax. I was scared at first but he explained to me the side effects, the procedure on how to take it. He was actually talking to me. He told me that soda would start to taste weird and that I might feel dizzy or out of it.
So I wasn't so scared anymore. I started with 10mg I believe in that first night and the next morning I woke up with a migraine. It was pounding and I took my little miracle pill (sumatriptan) and it went away within like 45 minutes. I figured it was a fluke. So I took my next dose at the same time the next night and then next morning, same thing. It got to the point where I would take the Topamax and then my miracle pill in one night so I wouldn't wake up with a migraine. And then I connected the dots.
The Topamax, which has some scary side-effects, was actually CAUSING my migraines. I quit it immediately and told my doctor. He agreed it was weird but switched me to Propranolol. And that so far has worked pretty well.
This was all within my first year of seeing Dr. Singla. Having such a nice doctor who was also my primary was amazing to me. I felt blessed to know I had someone. I had my grandma meet him and she loved him. She's the type of person who, if she doesn't like you, obviously you're a bad person. My mom liked him, said all his nurses loved him. Even my boyfriend liked him.
It was great. Until I had a migraine that lasted 8 days.
I was around 24 and my migraine happened sometime in spring I believe. I don't remember a lot from that week. But I know I had the beginning pain on Sunday and took my pill. I usually try to sleep after I take it because I get a nasty side effect of pain in my shoulders and neck and sometimes I get really hot and kind of uncomfortable. So I went to sleep. I woke up and it was still there. I took another 50mg. I was only allowed 100mg in a day.
It didn't go away the next day either. And I kept trying. I got to 200 mg, the limit I can take in a week and I was stuck. I figured i'd ride it out. I had spent nearly 6 years at this point dealing with it by ice-packs, pressure and sleep, I could do this for another 2 days right?
By day four I was way more concerned. I couldn't get a hold of my doctor until day 5 and couldn't see him until day 8. It was a pain filled blur, the medicine wouldn't work. Old stuff like Tylenol didn't work. My mom resorted to giving me Vicodin that she takes for her back and it didn't help. I was stuck in pain and I couldn't stop it.
I remember my mom making a large ice-pack by pouring water into a gallon Glad bag and freezing it. We took that one pound bag of ice with us to the doctor and there I was in the waiting room with my mother, the ice held to my head, my head in her lap, begging for the lights to suddenly shut off and for people to stop staring at me.
My doctor knew immediately what had happened. I had overdosed on sumatriptan sometime early in that month. That's why it didn't work when it was supposed to. He told me to get comfortable and he was going to give me a shot.
I asked him if it had to be in the head and he decided then was the perfect time to make a joke. -.- He said it could be either in between my big toe and little toes or in my right butt cheek. I stared at him and he laughed and said yea it had to be in my head.
So I bent over the table, my head in my hands with my mom holding one while he shot me in the base of my skull. Right below my hair line. Two shots on either side of my spine and then massaged it in. He told me the migraine would go away in a couple of hours.
It lasted another day before it really started to fade.
I asked him then if I had another attack if I couldn't get a hold of him if I could go to the hospital and they would do the same thing and he told me they wouldn't, which is why I have never been to the emergency room because of a migraine. I didn't want to waste a trip.
During that pain filled week. I had pain in my head ranging from 6-8. Dr. Singla had told me to rate the pain from 1-10. 1 was a bruise, 10 was in the hospital. You can see where I was.
After that, I was much more careful with my medicine. Every time I saw him, I had a new question and he had answers. I asked him about medication, about vitamins, about MRI's and CT scans. I've had both. I asked him about my MRI and if I had White Matter Legions. He seemed surprised to hear that I knew what those were. Thank you Migraine.com.
He would answer questions for me and ask about school, about my life, if I had a job yet, if I knew what I wanted to be. He was always interested. To date, he's my favorite doctor.
Since starting seeing him, my migraines have slowly started to fade from several times a month to maybe once a month. And usually around my period. He's told me that they're probably related but they hadn't always been for me. I still have actual triggers, like chicken, sugar, even flat soda will make me have a migraine. Sleeping over at a friends house, not eating, not drinking, sometimes grease, sometimes not.
Out of all of this, it's been hard. I've gone through 4 boyfriends and am now engaged to a wonderful man who happily supports me and understands that I just can't do things everyone else can do all the time. He understands me and treats me like i'm priceless. I'm forever grateful that he and I found each other.
I have found a job that I absolutely love. I work with animals now in a kennel. Sure it's loud, but we have ear-plugs and I've gotten used to the smell bleach so that doesn't bug me as much as before.
I've learned so much from Migraine.com and admittedly Wikipedia. But also from my doctor and those around me who also have migraines. I've found out that I have a disability that many people have but it's not something that I take advantage of or anything, but I know it exists.
It's been a long, painful journey from "It's a headache" to "I'm having a migraine attack."
I've found people who support me, who understand the problem and try to help and I've cut people out of my life who were negative influences on me. I'm still going and navigating through my life, pushing past the pain and trying to find the good.
My official diagnosis is Episodic Migraines Without Aura. And because of my wonderful doctor, they've slowly gone down. He made a promise the day I walked into his office, that he would get rid of my migraines within a year. It's been a couple of years since then, but he's brought me back from the point of Chronic Migraines. So I still trust him and i'll be his patient until he quits and then i'm sure i'll bug him until he finds me someone he trusts so I can trust them too.
Here's hoping I can update again in another 2 years and possibly be done with migraines forever. If not, then we'll keep navigating and seeing what's next.
Blessed Be everyone!
Which are you most sensitive to?