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My changing migraines

I had my first “typical” migraine at age 17. I woke up one morning to my alarm going off for me to get up and get ready for school, and the noise was just EXCRUCIATING. The second I opened my eyes, I was momentarily blind from the pain of the tiny amount of light seeping through the blinds on my window. I managed to get out of bed, shut off the alarm, toss a blanket up over the window to block out some more light, and took four Motrin and crawled back into bed with a pillow over my head, sobbing. I fell back asleep for a while, and when I woke back up it was gone. That day at school, I noticed myself stumbling over words, which I very very rarely did before.

Before that “obvious” migraine, I had had what I always called “hair headaches” as a child. Sometimes they would come from having a ponytail pulled too tight, or that’s what I always thought. In December of 2011, I learned differently. Three years ago, I went from having hair past my shoulders to a pixie cut, which meant I never wore my hair pulled back at all. Around the end of November 2011, I started having the “hair headaches” again, even though my hair was extremely short. I noticed they would almost always be on the left side of my head, and felt like each hair was being pulled individually, simultaneously. At first I attributed it to the stress of my long-term boyfriend’s impending tonsillectomy, because having that procedure done as an adult is apparently considered high-risk. I’m a worrier by nature, and I’ve always gotten tension headaches during particularly stressful times at school.

We got through the surgery, after a minor complication which involved me rushing him to the hospital and him having emergency surgery because one tonsil wasn’t healing properly and he was bleeding out. My scalp started hurting in the car on the way to the hospital, but the pain on these headaches doesn’t incapacitate me, just makes me miserable. I waited for 8 hours in the hospital waiting area for him to be released from surgery, taking Motrin occasionally because that was all I had on hand. Once he got into a room, I was able to go back and see him and spend a couple hours with him before returning home to sleep in my bed. The next day I went back to the hospital, and with him out of the woods I was hoping that the headaches would resolve completely.

Unfortunatley, they have not. They’ve evolved from always being on the left side of my head, to sometimes being on the right side, and sometimes being on both simultaneously. One day a couple weeks ago, I even had one on the back side of my head. I’ve started keeping a headache journal, documenting where, when, how long, what I take for them, what works, what doesn’t, what I was doing before hand, all that good stuff. I’ve found that standing in a blisteringly hot shower with the water beating on my head for a good half hour or so will start to ease the pain, if I take a couple Excederin Migraine right before getting in the shower there’s a pretty good chance that it will be tolerable by the time I get out. I’m always tired, all the time, but particularly right before, during, and after a headache episode. I do get minor mood swings around them as well, but I generally keep those under control until I break down crying over some small thing.

I’ve been on Lexapro since May of 2009 (for depression and anxiety), Xanax since November of 2008 (taken as needed for anxiety attacks). I’ve taken Percocet and Flexeril as needed for sciatica. I take a multivitamin and 5,000 iU of Vitamin D3 daily on orders from my GP because apparently I’m extremely vitamin D deficient. In February, I was ordered to get a CT scan without contrast; last Saturday, I had two MRI scans, one with contrast and one without. Neither scan showed anything wrong at all. My long-term boyfriend did some research of his own (because every time I did research, I was in the middle of a headache and couldn’t process half of what I read). He led me to this website, and several stories that I’ve read here match what I’ve been experiencing.

My grandmother and my aunt on my mother’s side both have migraines, but theirs are the typical “sensitive to light, sound, nausea” type. Because I’ve never really had the “light and sound hurt” thing with these headaches, I dismissed them as not being migraines. My boyfriend tells me that when I have a headache I turn down the volume on the tv, and ask him not to talk so loudly (which I did not realize that I did). And of course, when I have one, lying down in a dark quiet room, but lying down in a dark quiet room is always nice, so I never thought that it might be a symptom.

I’ve noticed that I have trouble making my eyes stay focused the day or two before a migraine hits. During the migraine, forget about it. I don’t really have double vision, per se. I also notice more “floaters” in my vision before and during the episode. I’ve noticed that if I take a couple Excederin Migraine when I notice the floaters, or notice my vision getting troublesome, that sometimes the pain doesn’t ever come but the other symptoms stick around. But other times, the Excederin Migraine doesn’t even help and I just have to suffer through it if I’m stuck at work, until I can get home, into my blisteringly hot shower, and then into bed.

On Monday night, I made some Texas chili with an award winning packaged mix my grandmother mailed me from back home. About four bites in to my bowl, my scalp started itching and twitching on the right side of my head about three inches above my ear, and about 10 minutes later a very big headache hit on the right side just around where the twitches were. For a while I was down to only having about one headache a week or less, but this week I’ve had three. Last night I was experiencing some warning signs, but so far nothing’s hit. I’ve got my Excederin Migraine standing by, hoping hoping HOPING that maybe this time, just maybe, it will be a painless one.

I’ll keep adding to this as things develop. I’m seeing my GP on Monday, going to talk to her about giving me a referral to a neurologist. I live in the DC Metro area, so I’m hopeful that I can find someone pretty easily who can start getting things under control for me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Kait Jackson
    7 years ago

    Positive news to update – I had my first neurologist appointment last week. The doctor was incredibly nice and listened to my concerns, talked about different medications with me, and put me totally at ease. After listening to my symptoms, she said that she believes I have combination headaches, migraine, tension, and vascular. She prescribed Elavil as a preventative (1/2 a tablet for two days, then a full tablet nightly) and Fioricet as an abortive. I’ve only been taking the Elavil for two days so far, but haven’t had any side effects so far! I had a slight frontal lobe headache yesterday (not a migraine) due to not having any caffeine all day. I’ve had a little bit of scalp tenderness, but no full blown headaches for several days. I’ll be starting the full dose of Elavil tonight, fingers crossed!

  • Stacey Green
    7 years ago

    Great article. I have had “hair headaches” and all other kinds of migraines all my life. For me, the hardest part is getting other people to understand the constant pain, misery, and suffering that goes along with the unrelenting migraines…
    BUT, in my opinion and from seeing so many specialists, taking the Excedrin Migraine isn’t doing you any favors. Any good neurologist who specializes in migraines will tell you never to take that stuff. It makes many actual migraines worse, and causes severe rebound migraines. The best thing is to take an actual migraine medication (Imitrex, Relpax, Maxalt, etc).

  • Cindi Moyer
    7 years ago

    I have always, since childhood, pulled my hair as if trying to balance the pain that was inside. I still do it, almost without realizing it, to this day 40 years later. My co-workers always comment that I may have a migraine coming on…

  • Kait Jackson
    7 years ago

    I do the same thing before a migraine hits, like my subconscious knows it’s coming. That’s my only “aura” so far though.

  • Jennifer Bradley Bundy
    7 years ago

    Been a lifelong headache sufferer. I’m 42 and I’ve had headaches for at least 37 years. I get headaches from my hair being put up, too. Although not always. And my headaches are atypical. Had all the tests…nothing organically wrong. Last neuro. I saw said I have muscle-tension headaches with migraine severity and tendencies. I’ve always been hard to treat. I have read though, that a lot of neurologists are starting to think that ALL headaches are migraines, just in different forms. Good luck to you!

  • Jennifer Bradley Bundy
    7 years ago

    Teri Robert Hi Teri, I’m getting Facebook notifications that you are commenting to me, but when I click and it leads me to here I am not seeing them. Could you please Facebook me directly if you don’t mind. I’m quite interested to hear your thoughts. Thanks!

  • Teri Robert
    7 years ago

    Jennifer Bradley Bundy Jennifer, I’m SO glad you’ve been able to see good docs and specialists. When people say “neurologists,” you never know. That really is a great place to live. When I first needed a specialists, my husband and I bit the bullet and drive the eight hours from our home to Philly so I could see Dr. Young at the Jefferson. Thank you so much for replying. My heart goes out to you. I hope you’re able to find some answers at some point. It’s wonderful that you at least have something that keeps things from getting “really bad.” Have a good weekend. 🙂

  • Jennifer Bradley Bundy
    7 years ago

    Teri Robert, ALL of my neurologists have been headache specialists. I am fortunate enough to live in the Philadelphia suburbs, so I have had access to some wonderful doctors. I don’t get typical migraines, and I think that is why no one has officially diagnosed me with them. I don’t get nauseous. Light bothers me sometimes, but not always. And sometimes even without a headache. Like going inside with sunglasses on bothers me, or going inside after being out in bright sun, etc. I think all headaches have a genetic component. And I think that all headaches could be considered migraine in one form or another (in us chronic sufferers) as everyone’s headache presents differently! I had two head injuries as a child. One at 4 and one at 13. I’ve had an EEG, and two MRI’s. Nothing shows up. But I am convinced that there is either something wired wrong in my brain, or that something broke deep down inside and they can’t find it because they aren’t looking for it. Just my theory. I’m no doctor, but I know my head. My headaches have changed a lot over the years. I do carry all of my tension in my neck, shoulders, and upper back, and that of course just aggravates my head. I have tried just about ever drug known to man, gotten nerve block injections, seen a chiropractor. etc. I currently get weekly acupuncture treatments. Nothing fully helps. I have good weeks and bad, but I still average at least 15 days a month with headaches. SO FRUSTRATING!!! I’ve kept a headache log for over 15 years. Can’t find a specific trigger. Sometimes some will give me a headache, sometimes it won’t. Sometimes I’ll be fine and then WHAM! A headache will just come out of the blue. I’m currently uninsured, so I can’t do much right now. I usually take Extra-Strength Excedrin with Coke and that will keep it from getting really bad. Or if it’s very frontal, I will take Advil Cold and Sinus. That usually alleviates most of the pressure, but none of the pain.

  • Teri Robert
    7 years ago

    Hello Jennifer, keeping in mind that not all neurologists are Migraine and headache specialists, have you considered seeing a specialist? Do you have any other symptoms with your headaches – nausea, increased sensitivity to light or sound, anything? That “Migraine severity” comment is one I really dislike because it’s such a misconception that the headache of a Migraine attack is always severe. Yes, there are some who think that all headaches are Migraine, as you said, but on the other hand, there’s no denying the research on the genetics of Migraine that seems to be contrary to that theory.

  • Angela Teremi
    7 years ago

    Hair headaches…I have never made the connection until now! I have been suffering for what I thought was just 7 years, Now I am wondering if I had them as a child. I just got my first botox treatment 2 days ago. I am praying it will end the cycle.

  • Mary Michele Collas
    7 years ago

    Good Luck to you……I have been trying to get them under control for 31 years…..

  • Christina Bosman Fulton
    7 years ago

    Thanks for sharing this. I’m always learning new things and realizing that I had migraines much earlier than I ever thought. I too had “ponytail headaches” when I was little and until reading this never connected them to my migraines. Last week I heard a story about someone with “car sickness” that was really migraine and I said AH HA! That’s exactly what I had growing up. But I was just referred to as a drama queen who just wanted to ride in the front seat. I’ve recently been taking Magnesium and CoQ10 for migraine prevention. It seems to be helping, but not completely taking away the headaches. Best of luck to you!

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