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My Silent, Dreadful, Misunderstood Illness

My first Migraine Aura happened when I was 7 and playing in the front yard. I remember it as clear as day. My friend and I were looking at the sun, and all of a sudden I could not see part of her face. I became a little scared and brushed it off as the reflection of the sun. I remember telling my mom I felt funny. Of course she didn’t understand. I don’t recall a headache that day. But terror, pain, and confusion were to soon enter my life as a young child.

Migraine Awareness MonthAt that time, the doctor gave me a little ergot pill. I just remember being afraid all of the time when my next episode would be, and the horrible pain and vomiting I was going to go through. My Mother was always so loving and kind and understanding. She knew I was very sick each time. I vividly remember her putting a blanket to cover my windows, and bringing me the garbage can to throw up in, and the wet rag to put on my forehead. Unfortunately, none of it helped the agony I was going to feel for 3 hours. Yes, for three hours from the time the Aura hit, I felt nothing but fear, pain, sickness and just dreaded that this was happening to me. Would that man in my head that has a hammer and chisel trying to get out, just get out already!

I never have been able to pinpoint when a Migraine would hit me. Was it the rolling TV, the camera flash, or something I ate? For years, and I mean years, I would not allow anyone to take my picture. I guess I had a migraine following someone taking my picture.

For years I would go through days where I would be a happy little girl, and woman to completely letting migraines rule my life. Am I getting one now? Am I going to get one today? What if I get one and my mom can’t get to me?

Another problem I encountered were family members who really did not understand the gravity of what was happening to me. I had an aunt, one who I loved, but she would say to me on a frequent basis, “you tell yourself you are going to get a migraine, and that is why you do.” To this day, as an adult, I’d like to speak with her so she could realize, you don’t cause yourself to have a migraine…there could be some triggers I realize that now, but mine have never been anything in particular. My own personal opinion is that mine have something to do with hormones. Mine happened more frequently when I was an adolescent, then when I was pregnant, and I think during menopause.

However, I will say for me there has been light at the end of the tunnel. My horrible migraines have turned in to Migraines with Aura, but the terrible headache and nausea are not so severe or are not part of the routine. I can even keep working on most occasions. And I don’t live in fear as I did when I was and young child, and younger adult. I am now 52 and unfortunately I still get Migraines and they do seem to come in clusters. I had 2 within this week. Before that it was 6 months.

About a year ago, my Gynecologist wanted me to take hormone therapy. It was a cream to rub in once daily on my wrist. No Thank you! I started having the Aura almost immediately and feeling sick and it quite clearly was linked to the hormone therapy cream. So I stopped taking it.

But, this week, nothing different in my life other than a little stress at work, and BOOM….2 migraines. The very last one I had spent a wonderful Memorial Day weekend cookout with family and friends, came home, crawled in bed to watch a good movie, and boom, just like that..Aura! Took some new medicine Maxalt, and had a slight headache and just felt bad for a while. Usually I accompany my Migraine medicine with a pain pill. However this time, I took only the one 10 milligram Maxalt. First time for me, but I think I will try it again next time.

For years, I took Midrin. And it helped me. Although I hated the taste. Then they stopped making it. So my doctor suggested Imitrex. It gave me heartburn, and with the prior Migraine I had, I had Aura, headache, and violent vomiting for hours. Past my normal 3 hour time period. I had not experienced this in many years. So Imitrex does not work for me. But it appears Maxalt does.

I write this story because I want others to know I do know what a Migraine is. I can relate to you, and I know how it makes you suffer. It affects your daily life, puts everything you are doing at the moment on hold, whether it is driving, having a wonderful time with family, on a vacation, at work or even as a child in school. Oh how I remember being in school and waiting for my father to pick me up after yet another episode.

Awareness is so key because most people don’t understand. Employers should know that some people have an illness that does require you to leave work immediately, and it’s not because you want to get out of working. I recommend to anyone that has REAL Migraine, and diagnosis, to always have a doctors personally written letter explaining the illness to their employer if it is affecting your job.

Explaining Migraine to the non Migraine sufferers out there is a problem and sometimes comical. I love it when a person tries to tell me they have them too! They just take over the counter migraine headache pills and they have “gotten them under control.” I have heard this so much in my lifetime, it is quite comical! Only me and the other real sufferers of migraine know its true magnitude. I describe it as debilitating just like any other other serious illness or disease. I think it should be classified with other illnesses that are known to be serious, and non sufferers should be informed before they relate their headache to mine or yours!

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

  • Luna
    4 years ago

    When I was first diagnosed with migraine in the 1980s was given Cafergot PB. Then the PB was taken out and plain Cafergot didn’t work as well. In the 90s tried preventatives. None worked and just caused awful side effects. Abortives either didn’t work or worked some of the time or for a short while. Triptans worked at 1st then just put the attack off for a few hours, didn’t abort or lessen the severity. 1999 no more insurance. Can no longer take Triptans because contraindicated. Along with most other drugs. So I tried Excedrin and it worked better than the prescriptions. Please do not insult me by saying that I do not have migraines if generic excedrin works for me 90% of the time. I know exactly what extreme attacks that last days are. Being so extremely sick you are afraid you won’t die but will just keep living this way. I really don’t like to hear such a judgmental attitude.

  • BethBlue
    5 years ago

    What do you do when your family says that they no longer have any “sympathy” for you? I really feel like I have hit the wall. I can’t afford therapy and I don’t have anywhere else to turn. My meds aren’t really helping much lately, and I feel as though my doctor is losing patience with me. Any advice?

  • BethBlue
    5 years ago

    Katie:
    I really appreciate your reply! I loved your article earlier this year (I especially related to the whole hair-falling-out deal because it has been happening to me too). My neuro is concerned about my weight loss due to Topamax, and now he wants to begin routine weighing-in sessions. I have strong feelings about that — I stay away from scales as a rule — but he is threatening to discontinue Topamax if I don’t do it. And now, all hell is breaking loose at home (my son did something especially reckless), so I am really stuck between a rock and a hard place. The migraines are much worse, but I am being forced to eat like a house even though I’m nauseated for fear of being taken off Topamax. Nuts, right?

  • Katie M. Golden moderator
    5 years ago

    Beth,
    Sounds like your family is as tired of your Migraines as you are! Maybe they just don’t understand the full extent of how debilitating they can be. Here’s a great article to share with them: http://migraine.com/blog/10-things-i-want-to-share-about-migraines/.

    And if you feel like the meds and your doctor aren’t helping anymore, there is nothing wrong with getting a second opinion or with firing your doctor all together.
    -Katie

  • Jan Piller
    5 years ago

    Some people don’t want an explanation and have no interest in your pain. I have also received the “It’s just a damn headache” line while her charges were running a “running with the bulls marathon” through the house. I’m lucky in that the triptans work for me (day one and maybe day two but not beyond) but if I can offer some advice…. take that triptan the moment you even suspect a migraine is looming. It works far better and abhorts the migraine much quicker the sooner you take it. This is coming from 27 years of chronic migraine and 10 years of triptans. Good Luck and many pain free days for you.

  • sues
    5 years ago

    I am lucky, in that, all my 5 siblings suffer from migraines. Both of my parents suffered from them. It’s great to have a sister to lament with. If we are together and one of us has an attack we know the other person will understand. For a long time we all thought the cause was different for each of us, stress, teeth grinding, sinusitis and more. Later in life each one have been diagnosed by our doctors as migraine sufferers.

  • Ali A.
    6 years ago

    “you tell yourself you are going to get a migraine, and that is why you do.”

    …. I love my friends and family, and they are mostly supportive, but it’s infuriating to hear this (and yes, I’ve heard it too.)

    The notion that these headaches are self-created or imagined is so insulting. I’ve suffered from migraine for about 13 years now, and I would do anything to live pain-free. I constantly fear that a migraine will form during work, important meetings/events or social situations. I’m plagued by the fact that I rely so heavily on medication and really can’t afford to be anywhere without it.

    I’m glad I discovered this website because it’s showing me that I’m not alone; that there are others out there who go through the same thing as me.

    Best of luck to you!

  • Pamela Smith author
    6 years ago

    Update: Well I have had another Migraine attack yesterday. I had a very important appointment and was getting ready to leave. I suddenly got an aura. And you know the rest. Everything stops. I did get to try my new medicine, Maxalt. I think it worked well. I felt bad, at times felt nauseated, and it made me very sleepy. So I was in a semi-sleep state for the about 1 1/2 which was good. Then I tried to decide to take the second one, because my directions say not to take another pill until 2 hours after the onset and first tablet. I opted to not take the second pill as I know my normal course is about 3 -4 hours. It started at 11:00 am, and ended really about 4. I felt really awful until maybe about 8 pm last night. This morning felt a little hungover, and head slightly hurting occasionally. So I’m thinking Maxalt will work for me.

    I have been called to Jury Duty on Friday. I am anxious that I may be picked and will have to tell the judge about my Migraine episodes in front of everyone in court. These are the times you wish everyone new about what a real Migraine was. I know for a fact if I were in a jury box, I’d have to stop the trial, and tell the judge, “I’m sorry but I need my medicine, and I can no longer sit on this jury today!” I don’t want anyone thinking I’m getting out of jury duty, because I want to serve. But I must make them understand if the ugly monster creeps up on me, they will just have to deal with the situation and excuse me.

  • Luna
    4 years ago

    Last jury duty summons I received had a place to ask for relief from jury duty. Wrote back “migraines that are triggered by smells/odors”. Received notice that I was off the list and would not be called again.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Pam,

    So sorry to hear about the migraine. It’s never a “good” time for an attack is it?

    I wonder if you were to have taken your medication as prescribed that you have felt better, sooner? What do you think? Instead of feeling better at 8, maybe you would have felt better and stayed that way at 4. Just a thought.

    Hang in there, we’re pulling for you.
    Nancy

  • lara
    6 years ago

    The experience you’ve had with some family members echos what I’ve experienced even with my exhusband. I was told that if I’d “just get out of bed and go to work, I’d feel better.” I was also told that I was drug seeking because doctors were prescribing me medication that was both preventative and abortive. I don’t speak to those family members anymore. Imitrex never worked for me and I’ve tried many of the triptans. Some work and some don’t. It’s funny but even in ER’s you’ll get the evil eye if you tell a nurse that triptans fail. Weird.

  • Pamela Smith author
    6 years ago

    I understand fully. Wow, if they only knew how you felt. You can’t possibly feel better just because you would be working. You can’t work! Since I have taken Midrin so many years, I’m not real clear on the Triptans, and all the other types. Luckily, it seems the Maxalt will work.

  • astrosdiva
    6 years ago

    Maxalt was the first and only triptan drug to help me. I’m 61 and have had frequent Migraines for 50 years. Excedrin Migraine is junk science. So is anything over-the-counter. I think they took Midrin off the market recently.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi MY7A

    I’m not a fan of Excedrin Migraine either, but happy to hear you have found a triptan that helps.

    You are right, Midrin the brand name is off the market, but you can get Midrin equivalents, which is what I use.

    Nancy

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Pam,

    I’m glad to hear Maxalt helped. Taken at the very first sign of an attack is when these medications (Maxalt and other triptans) work best.

    Excedrin Migraine may indeed work for those who have a few migraines a year. To take it more than two to three times a week would no doubt give us much more trouble than it’s worth. That trouble is called medication overuse headache and nobody wants to deal with that!

    Nancy

  • Pamela Smith author
    6 years ago

    Maxalt seems to work for me as I took it yesterday, and it helped me sleep, and kept the severe headache at bay. Felt really bad, and was in bed most of the day. I’ve never tried Excedrin Migraine but I here people say all the time, “those work for me, you should try them.” I just laugh.

  • infiniterra
    6 years ago

    I have had migraines with and without aura. Many hours each. Nothing helps during what seems infinite time, then I feel better, and usually the pain , nausea, inability to even make simple things, make mathematical calculations, understand and talk, depression,etc., strikes again. There are transitory personality changes which lead to painful situations sometimes.

    All the process including the “hangover” lasts about 3-4 days. Maybe for more than 48 years, several times a month. Now at 65, I have had more migraines every month than ever. I have read many testimonies of people who, like me, cannot make plans, cannot have a job, is unable to even walk. And I need to have a job, take care of mines..not possible.

    Almost all of the preventive drugs have side effects I cannot stand. I cannot take triptans. Sometimes lysine clonixinate plus ergotamine tartrate(called here migradorixina) helps and the migraine is shorter. The last hours or day of the attack, OTC medicines help.Sometimes I have to take clonazepam because I cannot stand the situation and cannot sleep.

    In my family almost all are migraineurs.. Life is kind of hell.

    As you tell, a lot of people does not understand, and many think it is a kind of nervous event, a psychosomatic or even imaginary pain, and not a serious neurological illness

  • Nancy Harris Bonk moderator
    6 years ago

    Hi infiniterra,

    As you probably know migraine is a genetic neurological disease and from the description of your family, we can see the strong genetic component.

    May I ask what kind of doctor treats you for your migraines? It may be time to see a migraine specialist? These doctors are experts who treat one disorder all day every day. Let me share some information about this with you: http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.

    Nancy

  • Pamela Smith author
    6 years ago

    I’m so sorry you experience these so intensely. Mine never lasted past 3 to 4 hours. But I have felt hungover the next day, and my head was very sore. It does make life miserable sometimes. I hope you find something that will work.

  • Nancy Harris Bonk moderator
    6 years ago

    Thank you for sharing! Awareness is key.

    I take Midrin too and there are Midrin equivalents available if you are interested. Here is some information on Midrin; http://migraine.com/blog/update-migraine-abortive-midrin-33111/comments/#comments.

    In fact I have mine filled at my compounding, called isometheph-dichloaral-acetaminophen.

    Nancy

  • Pamela Smith author
    6 years ago

    Thank you Nancy. My Pharmacist and Doctor do not even offer Midrin. I have gone through a battle with my Insurance company covering the new prescriptions. I will check out your link for Midrin. Thanks again.

  • DebbyJ56
    6 years ago

    I have neve had auras. Just the building pain into migraine or a sudden bolt of searing pain out of nowhere since I was five years old. I am now 57 and they are worse than ever. I have had chronic daily migraine headaches for seven years with no cure in sight. It is my life.

  • astrosdiva
    6 years ago

    I hear you all too well, Debby. Doctors told me all my life that the Migs would go away when I reached menopause. They got worse and more frequent. A Mig contracted in 1998 has never truly gone away. I have it to some degree all the time. The right side of my head always feels “heavier” than the left side.

  • ama5
    6 years ago

    Am happy when i read about people who suffer from migraines, it makes me feel that am not alone in illness and i can be free to discuss about migrain without being viewed as a totally helpless person. My major issue has being the Light and a whole lot of knee cap pain. I have suffered migraine for 10 years and am 24 years old.

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