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Never knowing if it’s me or the migraine

20130529
I’m sleepy. I’m hungry. I’m elated! I’m irritable. I’m grumpy. I’m gassy. I’m confused. I’m achy. I’m tired. I’m stuffed. I’m unable to remember your name. I’m Janice. I mean I’m JANET. I’m forgetting my own name. I’m stressed out. I’m snapping at my boyfriend. I’m annoyed with my friend. I’m in love with my life! The world is so beautiful! I’m itchy. I’m fidgety. I’m lethargic. I’m sniffly. I’m stuffy-headed. I’m bored. I’m thrilled. I’m manic. I’m moody. I’m snuggly. Don’t touch me.

I’m a migraineur, and I’m not sure if what I’m feeling is related to my migraine disease, my migraine medication, my natural self, or none of the above.

Reader favoriteCan any of you out there identify with my confusing and contradictory first paragraph?  (I am large, I contain multitudes.)1 Pardon the overused phrasing here, but I feel as if I’m riding a rollercoaster much of the time.  I’ll be in the midst of a serious conversation with my beau and feel this calm wash over me:  I am fully involved, I am 100% present, I am nun-like in my peacefulness and attentiveness.  Two seconds later, something snaps and I feel as if I can’t wait another second to get up and move on to the next thing.

Physical pain/discomfort can work the same way.  I’ll be having what seems like a pretty good day when suddenly my back will spasm or my eye will catch the light in such a way that I realize, all of a sudden, that a migraine is coming.  I have grown wary of my occasional elated moods, as I know those are often harbingers of the migraine attack to come.

And on migraine days, if I’ve had success with my medication, the pain and other migraine symptoms begin to dissipate until I’m stuck with a grayer, sleepier version of myself.  Is this the postdrome of migraine or is a side effect of my medication?

When I forget a regular bookshop customer’s name, is it because I am aging? Am I overworked and tired? Am I suffering from the confusion that accompanies a migraine, or am I suffering from the confusion that sometimes goes along with my migraine medication?

On days when I am short-tempered and irritable, is it because I took Imitrex the day before?  Is it because a migraine is on its way? Is it because I’m kind of a b*tch sometimes regardless of my physical health?

Does anyone else out there feel as if there are no definitive lines to separate your migraine-free self from your migraineur-self?  Is anyone else faced with the problem of not ever being sure where these behaviors are coming from? Please share if so, cause I fear the thought that I may be in this alone!

Love,

The Migraine Girl

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.

1. http://www.brainyquote.com/quotes/quotes/w/waltwhitma132584.html

Comments

  • Noushin
    4 years ago

    Thanks for sharing. This is exactly me when taking medication. It described some symptoms i didn’t know were related to my migraine or medication.

  • Alex
    5 years ago

    yes yes! 100 times yes!! thank you for writing this. I relate 200%.

  • Lauralee
    5 years ago

    I am so glad you wrote this! I was beginning to wonder if I was bipolar. Today is the day that the migraine is hovering just right there I know its coming but it’s just a little too early to take the abortive meds. So I’m in bed all day,and I have a boyfriend that really has no patience for laziness. I am lazy or slower than most. I take medications for migraines, depression and arthritis. I forget everything if I don’t write it down. I have raised 2 daughters that I have raised as a single mother,they have learned from a very early age for momma to write it down if its important. And then pray momma’s well enough to attend, just in case I have befriended a teacher that lives nearby to take them to events and momma gets pictures text to her. I’m quiet I start a sentence and get half way through it and forget what I’m saying. I jump topics. I stare off into space when I’m supposed to be listening or discussing something. I use the VA as my primary provider I guess they try. I can’t get in very often. How does everyone deal with their thought loss?

  • nicole
    5 years ago

    Yes!! so much yes!! This describes my life perfectly; and it only makes it even harder to explain to other people who already don’t understand.

  • 2MuchPain
    5 years ago

    YES,YES,YES !!!!!!!!!!

    I thought I was alone and going crazy on top of having migraine pain.
    So thrilled it’s not just me but NOW WHAT ????
    I can’t get friends or family to understand the migraines, I’ll get nowhere with this !

  • Brenda
    5 years ago

    I have never had anyone describe what I go through on a daily basis until I read this article!!! WOW is all I can say. Exactly what I wanted to say for years but did not know how!!

  • 2MuchPain
    5 years ago

    Exactly…isn’t that part of the condition ? So glad someone wrote and posted it !
    Hope you have a good weekend.
    You’re not along.
    Cheers

  • LJ
    5 years ago

    I must say that I am in a similar place right now. My mood swings and physical state change so often due to chronic migraine that it’s hard to know if any of it is also due to normal “just growing older” stuff. I worry that who I am now is not a temporary thing. And I pray that my family and friends maintain their patience with me.

  • skullsnbows
    5 years ago

    Sometimes I feel like I am a migraine with a body. Every symptom I have is like, “Is it the migraine coming/going or is it the medication?” I don’t feel like I own myself anymore, migraines have taken over and I am at their whim.

  • Linda K.
    5 years ago

    You are not alone!

  • Brian in TN
    5 years ago

    Wow, I feel like I have 57 new best friends! So many people describing my life, I’m sitting here with tears running down my face. I spent 5 1/2 years going to sea on submarines and people tell me they don’t understand how I could face that. I always say it never bothered me very much but I’m thinking “submarine duty ain’t shit, deal with my migraines if you want to impress me.” I salute every one of you, there are days we face when just getting out of bed takes more courage than test depth in a submarine.

  • body
    5 years ago

    Well said! And, with humor:). Me, when I was chronic. Now, that I have remitted to low frequency episodic, I can catch the moods as a warning sign and hopefully intervene. My husband is a whole lot happier:).

  • Dori Fritzinger
    5 years ago

    I can relate being nervous when it is a real good day – “waiting for the next shoe to drop”
    Always ready for the next attack to hit

  • JCZ
    6 years ago

    Thanks for this. I thought it was me. But in the same way I know it isn’t.

  • Les
    6 years ago

    Thank you for this post. While not everything listed applies to me, many things you’ve mentioned here I can relate to. I admit that I don’t do a very good job at making a mental note that my moodiness is likely attributable to my condition. Thank you for reminding me to be more cognizant of it.

  • Sara
    6 years ago

    <3 Thanks you for this post. This is me!! I'm very new to being officially diagnosed with CMS, and I find myself facing this EVERYDAY!! I just can't face work today – but is it all "in my head" or is it a migraine? Is it me? Am I really this lazy in life, or this intent on avoiding reality? I wasn't always like this. There was a time I could just ignore the pain and go on with life. Why can't I do that anymore? Has the pain really gotten worse, or has the aging process madie it more difficult? Or could I really do it if I wanted to try & I just don't want to try? Am I depressed or am I "hung-over" from the migraine I had yesterday? Why do I feel like crying when in my head I KNOW it's this illness and not that I'm a terrible person?

  • Linda K.
    5 years ago

    Sara, you hit the nail on the head (or is is head on the nail? Words and phrases somehow get turned around sometimes!). I am often hit with the guilt of thinking somehow I am just giving in and not trying hard enough. Thanks for sharing.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Sara,

    Thanks for sharing your very personal story with us. This is a difficult topic, one that really is “all in our head”.

    Chronic illness is life changing. To cope and accept a chronic illness is an ongoing battle for me. As soon as I think I’ve got it down pat, the other shoe drops and I take a few steps backward.

    For me, seeing a counseling who specializes in chronic pain has been helpful. Learning coping skill to deal with chronic illness is a good thing – as Martha Stewart says!

    Nancy

  • write4solace
    6 years ago

    Janet,

    To be understood…by those who don’t suffer migraines, how can we be…when we live in a brain that is often out of our own control. Thank you for describing what I experience. Since having migraines some people have told me, “I never know which Karen I am going to get!” This stuns me, because I am trying so hard to be me. Or I hear, “You don’t have a filter, you don’t think before you speak.” If they only knew how hard I search for my thoughts before speaking! Before migraines and medicines, I was simply known as a kind person, now I am somewhat unpredictable. How grateful I am for the days when I don’t feel my head, when I am whole; not parts broken, aimless and wandering.

    There is good news. After 23 years of migraines, experimental medications with the Cleveland Clinic, migraine surgery and an entire host of alternative applications, what reduced my migraines most was eliminating wheat and gluten from my diet along with all the other foods that seem to initiate my migraines.

    Also, I look at my life as a detective would, the goal is to live the best life I possibly can. So I ask myself daily, “Will this person or experience enhance my peace, or drain me?” I see migraine pain as a navigational tool that can lead me to make better choices. I eat healthier; less pain. My friends are caring and aware. I require less to be grateful. A day without pain is a gift beyond treasures.

  • sped
    6 years ago

    Thank you for your post. What type of migraine surgery did you have? Was it at the Cleveland Clinic?

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Karen,

    Congratulations on seeing a reduction in your migraine frequency and severity. YIPEE!

    And thank you so much for sharing what is working for you – I love your statement -“Will this person or experience enhance my peace, or drain me?” Do you mind if I borrow that too?

    Nancy

  • Maggie
    6 years ago

    Janet
    I too experience the same problems with mood swings. Sometimes I feel like crying for no reason, then a migraine will hit. Or I will have cravings for food and can not stop from eating anything sweet or salty in the house.
    I know about the brain fog too, I feel like my brain is wrapped in cotton and nothing can process. No one understand this unless they have lived it.
    My first migraine I remember was about the age of 3. I have tried almost every medication, like many. I am writing this late at night because the steroids. I am taking them to break a cycle of migraines that started two weeks ago.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Maggie,

    Yes, steroids can play havoc with our system – irritability, excessive hunger and insomnia to name just a few potential side effects. I’m sorry to hear you are going through some of them.

    Hang in there and I hope your migraine cycle has broken by now.

    Nancy

  • Wendy Mayerson
    6 years ago

    WOW! I really had to wonder, did I write this? I have had migraines my whole life, but had an almost constant migraine from November until just recently. Various meds have been tried and topomax with propranonal (sp) and general Maxxalt seem to be a good combination for me. I feel like I just woke up from a long nightmare and am waiting for the curtain to fall.

    Thank you so much for sharing your story. I wish none of us had to live this nightmare, but am so glad not to be alone.

  • Gail Q.
    6 years ago

    Thank you for your post as I thought I was the only one that has had long term migraines. I mean that since mine started back in 1994 they have always been there to some degree and have never gone away. My best days have been at a 3. I feel like the rest of you that I have very hard days that I don’t know if it is me or my migraine. I have been told many of thing for my migraines. The most recent is that I have multi headaches and this is the reason that medication have not been working for me. I do feel like I’m in a fog in my mind some days and others just out of my mind.

    Reading you posts helps me to not feel so out of the normal for what I’m dealing with.

  • sheri2u2
    6 years ago

    Everytime I read your posts I feel a little bit more “normal”. I appreciate your sharing.

  • Artsywoman1963
    6 years ago

    I love your story and am relieved that I am not alone with my issues. I understand and thank you for your support in writing this. Stay Strong!

  • chronicpainovercome
    6 years ago

    I agree 100%, I feel exactly the same way. You wrote how I feel, I get you. You are not alone.
    I am fighting these migraines and not letting them get the best of me. I recently had one for 9 days. It was hell on wheels, I continued to work in my fog and pain and did my best but the struggle remains. Migraines have affected every aspect of my life negatively and no one understands chronic pain, well very few people anyways so when people ask how are you, I always say Great 🙂 It’s easier to lie than to sit down and tell them the truth.
    Your article is my life daily. Thanks for your honestly and showing us we are not alone.

  • dawnschell
    6 years ago

    Ye Gods, every single day. You’ve described my life!

  • georgiaslesinger
    6 years ago

    I know just how you feel. I just wish I could “suffer” from the euphoria more often than the other moods!

  • Danielle E.
    6 years ago

    Thank you so much for sharing! I could really relate. I go through this all day everyday! I also wonder if it’s just that I pay so much more attention to my body now and all of it’s symptoms and aches and pains after my migraines became chronic. Before becoming chronically ill, I never kept a migraine journal or took prescription medication or had head pain every single day so I never really bad all that much attention to my body. Okay, I’m hungry. I’m tired, etc. But now it’s – I’m manic. I’m irritated. I’m depressed. I’m so happy! Why does it feel like my kidneys hurt? What am I so tired! I can’t get out of bed before noon no matter what time I go to bed! Is it my medication, my migraines, or just me?!

  • Adn924@woh.rr.com
    6 years ago

    Wow! You nailed it. You must be my migraine twin. So strange but comforting to know others have these same issues. This site has been a wonderful find. Thank you for writing.

  • Michelle Piper Williams
    6 years ago

    Janet, just read your article and I experience similar issues with fogginess, forgetfulness, etc. I will sometimes call my sons by the wrong names and sometimes I cannot remember the name of something as simple as “dish washer”…and I’ll have to talk around it and say, “you know the thing that you put dishes in?” until my hubby will say the word for me. I can also switch moods really fast and this has all started within the past 5 years during which time my migraines have become more frequent and intense. I am at a loss as well in trying to figure out if it’s my meds, my brain, or my age/stress that are underlying these periods of fogginess and moodiness. Just wanted to let you know that you are definitely not alone in your experiences. Thanks for the article because I don’t feel quite so “nuts” anymore!
    Chat Conversation End

  • gerryo2
    6 years ago

    I think you are correct and not alone. There is so much overlap and no possible way to separate the two lives. I still cannot tell at age 58 with 45 years of migraines. I could have written this myself. You are so right on about the days when you feel on top of the world because you know the migraine going to hit sometime.

    I am adopted so when these first started at age 13 nobody had a clue of what I was going through. No family history and at the time migraines were pretty much a myth and “in your head” (yeah I know that! it’s above my right eye). I saw my first neurologist in my 30’s and she talked about her Aunt and genetics. The good part of this story is when my son had his first migraine in his early teens, I knew immediately what it was and we were able to get help and provide support. Luckily his are not as bad as mine. By the way, there are DNA tests at sites like 23andme and it has 3 markers for migraines, I am positive for 2 of them.

    I now know my main trigger is weather fronts and typically a day ahead of most storms. The other two triggers are light catching the eye and sometimes alcohol. These two I have some control over. Up to now I have not been able to control the weather.

  • Les
    6 years ago

    Gerry, like you I am among those who has a main trigger is weather fronts, and storms.

    My other triggers are failure to drink caffeine before noon, lack of hydration, nitrites and sulfites and major disturbances in my sleep cycles. Alcohol sometimes, but not too often.

    I have sleep apnea, and my C-PAP machine helps me avert sinus-related headaches, but it stinks when I have a great night’s sleep, only to awake to a day where the barometric pressure is falling rapidly, and a storm is rolling in.

    Abortive meds like Relpax have worked very well for me in the past year, but they are expensive.

  • collmar
    6 years ago

    I can totally relate to all of those feelings. I have felt like a crazy person so often that I just embrace it now. The anger sucks because it results as other people not understanding what I am dealing with and acting like I can just suck it up despite the vomiting and inability to lift my head. I have been dealing with this type of migraine for 9 years. I have been on all the preventatives from verapamil and inderol to neuronton to topamax. I have taken every pain medication there is it seems. Unfortunately, once I am nauseous, which is typical since I often awake with a migraine, I have to go to the ER. There I am given a cocktail of meds including zofran, turodol, Benadryl and dilauid. Then begins the “roller coaster” again. I will say,though, that I have recently found a life altering treatment. I began getting trigger point injections in my trapezius and rhomboid muscles 5 weeks ago. There is a small amount of Novocain but nothing else. Ultimately, the injections act as very deep and strong acupuncture forcing muscles to “behave.” I have had two migraines that responded to zomig and zofran, which have been useless for years. I did have one major migraine that required an ER visit. Before these treatments I was at the ER at least once a week. I highly recommend you inquire about this type of treatment!!!!!

  • Diana-Lee
    6 years ago

    Yup, I have definitely felt this way. At least a couple times a week. 🙂

  • Lmcfalls
    6 years ago

    You are not alone. I do feel you may be over thinking things however. After 30 years of migraines I do all I know to do to take care of myself (within reason) and then try to remember to keep as much balance as possible to my life. Some days I try to focus more on being happy and greatful that I am not in pain rather than spending time on why.

  • B. Morebello
    6 years ago

    I was confused for a moment because this is everything that goes through my head daily, so I thought I had written it! You just perfectly described everything that I think about daily. I think the confusion about what’s causing what is one of the most frustrating parts about migraineurs.. for me, it feels like migraines and its symptoms completely take over my life most weeks.. I would do almost anything to have one week free of migraines. Hell, even one day!

    Thank you for your article, it helps to know that I’m not the only one out there feeling like I’m going crazy.

  • taralane
    6 years ago

    Thanks for the article. After reading the other comments, you have described most of us. And I wonder why I cannot let go of my anger! I think it is part of the disease, and it seems other migraineurs feel the same way. Just when I think I have moved on, I get a bad attack, and it all comes back.
    I have had this disease and have been trying to deal with it for 44+ years. I’ll be 64 this summer and am trying not to feel my life is over. I keep fighting, but some days it is OK and some days it is too hard, and I am too fatigued from too much pain for too long to continue fighting. This too passes, and on we go. I wish I knew how to make the life changes stick long enough so I can separate “the migraine” and “the me”. One day….

  • B. Morebello
    6 years ago

    I feel like that often, and I’m only 26, I can’t imagine going through this for another 40 years. But you are right, it passes and one day things will get better.

    I’ve been fighting migraines since I was a child and it’s taken me years to figure out what treatments sort of help, which treatments don’t help at all, and which ones make things worse. The best way I’ve found is to just try everything out once. Every treatment you can find, pharmaceutical or natural. I’ve found that being on tramadol throughout the day really helps with the overall discomfort and pain, also for spasms. Maxalt has been the best for sudden attacks, imitrex had too many bad side effects for me. I also started botox treatments 6 months ago and that has helped a little as well and I like that i only have to do it every 3 months. Then I bought these FL-41 tinted lenses from Axon Optics online and they’ve helped tremendously with light triggered migraines.. I never realized how sensitive I was to light, I think most people don’t realize it either. I also live in California, so in my desperation to find some relief, I did get my medical marijuana card and have tried it for the first time. I’ve tried a few different types, from vaporizing to edibles, and that has also helped a great deal just for the pain, inflammation, discomfort, and most importantly the nausea that I was feeling 24/7. So the combination of the tramadol daily, maxalt as needed, botox every 3 months, and medical marijuana when I’m at home.. it’s helped cut down my bad days from all week long to 4-5 times a week. Hope this helps!

  • ravenbird
    6 years ago

    Thank you so much for this article. I’ve had “headaches” since I was about 8 – diagnosed migraine at around 50. I’ll be 70 this year and thanks to my mom I found this website about four months ago. I am so thrilled because of articles like yours. I’ve always thought it was just me and why can’t I get myself under control and “how many aspirins did I eat?” and unable to think about anything. So, thanks for writing this.

    I think I’ll try and discover who I am apart from my migraines. I’ve never journaled before I joined this website.

    Thanks, really, thanks.

  • sammijohnson
    6 years ago

    You are definitely not alone! When I was taking Topamax on a daily basis for prevention, I was always fuzzy-headed, slurred words, confused, and cranky. Imitrex makes me feel mopey, light-headed, and nauseous, so I understand why you might question whether or not the Imitrex is making you feel a certain way.

    This was a wonderful article, and you’ve done well in reminding us that we have empathetic supporters out there! Thank you!

  • Jill M.
    6 years ago

    Sammi, I’m right there with you on the Topamax. It also gave me severe anxiety. Who needs that along with migraines?? Ask your doctor about Zonegran. It’s similar to Topamax, but I haven’t had the side effects. It’s worked very well for me both decreasing the frequency and the severity of my migraines. I will also agree with B. Morebello about the Maxalt. Imitrex did not work for me, either, but the generic of Maxalt is great! I use the melts along with a couple of naproxen and get fairly quick relief. Good luck!!

  • B. Morebello
    6 years ago

    I was on both Topamax and Imitrex, both were horrible for me.. if you can, try Maxalt instead of Imitrex, there’s a generic available for Maxalt as well.. and instead of Topamax, try Verapamil.

  • miaabernathy
    6 years ago

    Wow, thanks for putting such a dead-on description of me out here in your article. You are soooo not alone in this. I am left wondering so very often if it’s the migraine, the meds or is it just me? I’m in the process of changing meds right now because of this very issue. I’ve been told I have no emotions, don’t care about anything, am disconnected, etc. Only to be so emotional the next day (or 10 minutes later) that I become upset with myself for not being in control of it.

    Then there are the days I’m so tired I can’t do anything even though I don’t have a migraine, or have it under controll with the meds. It’s a roller-coaster as stated here already. It makes you a little more crazy, but as they say, “That’s life” I geuss. Thanks for sharing, there’s definitely some comfort in hearing it from someone else.

  • Writermom
    6 years ago

    Thank you again for writing this post today. I grew up with my father regularly having migraines. My grandmother had them. My aunt had them. My cousin has them. Two of my nieces have them. But with my father, particularly, being with me everyday, I just thought this was the way most people were. He often came home on Friday evenings from work with a terrible migraine and didn’t get any better until after vomiting. In those days there were some things to try for migraine, but not much seemed to help him. I know for sure that mine began when I was a senior in high school, but I surely had symptoms prior to that. I am so glad to hear all these things you feel, as, like I said, I used to think everyone was like this; that it was the normal thing. Well, I think it probably is for most of us migraineurs. And that explains my father’s behavior, especially his harshness sometimes toward my mother. Thanks again. And bye for now.

  • Buffi
    6 years ago

    Oh, sister. It’s not just you (as evidenced by the abundance of supporting comments!). But thank you for voicing this and letting us know that we’re not alone in this crazy-making phenomenon!

  • Writermom
    6 years ago

    Hi, girl! I know exactly what you mean! Some days I have a small (?) migraine and I am physically able to get a lot done, so I find myself very short and ugly with my husband, who may not feel well. The next day I will be hit with a “killer” migraine and be down for 3 days or so. Some days I will actually have a day when I feel VERY good and I am pleasant and happy and I wonder what’s wrong? I know that I am going to be very sick. So, as you say, I never know if it’s me or the migraine. Very confusing. Who knows what or where the real me is?

  • Cecile
    6 years ago

    What a great post this is – I have never seen myself described so well. Thank you for sharing this. I’ve had chronic migraine all my life, but didn’t realize it or get diagnosed until a few years ago – I’m now 60. All those years I thought it was me, but now I know it’s the migraine. So, in light of that, I always wonder what the “real” me would be like without migraine disease? Guess I won’t really ever know. I am thankful that things are under better control these days.

  • aellis
    6 years ago

    Wow!
    I am so sorry you feel like that but I am so glad I am not the only one. The effort of pretending that “all is well” and lying to people when they ask, “How are you today?” because you know they don’t really want to know how you are is almost asd exhausting as the moods themselves. I echo the frustration in finding the words – especially when they are right there in your head but they refuse to come out of your mouth. I have to work very hard at not dwelling on stuff that makes me mad for no other reason than I have a virtual icepick dangling out of my temple (or eyeball), bouncing with each move I make.
    Many of my migraines are preceded by a day of uncharacteristicly frenetic energy and busy-ness which is very productive only to make up for the fact that the next few days will not be. And AIWS type stuff like wondering if you are driving on the right side of the road (or in the right direction) or strange vertigo or objects jumping. I wouldn’t call it Wonderland, though. 🙂
    Thanks for sharing. You are not alone.
    – Amy
    “Everybody is somebody else’s weirdo” – Scott Adams

  • lulabelula
    6 years ago

    i never thought of the day, or half-day, or hour of frenetic energy that occasionally comes as a prodrome to my migraine. i just assumed whatever productivity i had tried to cram into that small time frame had overstimulated me, or i had overdone it. the slamming intense headache always comes regardless. maybe my brain doesn’t want me to anticipate it. maybe a teeny tiny part of me still holds out hope that one day it won’t return.

    i also experience AIWS symptoms since having botox injections for chronic migraine last year. i have had a permanent burning hot headache stemming from my left temple since the moment the toxin was injected there. no doctors seem to be able to agree as to what’s causing my original migraines, let alone this new, daily headache that has stolen my brain.

    i can no longer do simple math. i can’t fill out a form or read more than a few pages of a book at a time. driving is VERY difficult for me because of the concentration and spatial perception issues that have come from “the botox headache.” i am no longer able to work. along with the fogginess of everyday migraine, i often cannot find the right word (even seven months after stopping topamax), and i fear i am permanently losing my cognitive thinking skills. short term memory is quite unreliable. i will swear something happened that never did, as if something i read in a story or overheard, becomes confused in my brain as part of my life. I completely forget things and conversations that actually occurred, and can’t retrieve the memory even when walked through the event.

    i often catch myself saying, “i don’t know if it’s the weather, or my period, or this new med or because i stopped that one, or it’s too loud or too hot or the water pressure is screwing with the pressure in my brain.”

    sometimes i catch myself mourning my former brain, kick myself in the rear for not heeding signs from the universe and listening to my body and my intuition.

    i’ve been sick for four years, have two young boys and a phenomenal, patient and forgiving husband. we have been all over the country for various hospitalizations and procedures (including targeted blood patches for spontaneous CSF leaks).
    i want to be well. i want to not be a screaming banshee b*, a sobbing mess collapsed on the floor in pain, a moody, unpredictable, out-of-control moaning, roaring beast. i want to get better. i’m learning acceptance and to love as i am and our lives are, because that’s what i’ve got. and i’m tired of missing so much of it.

    this is such a comforting place. reading the original post and everyone’s comments helps me feel a little less like i’m completely losing my mind. or at least that i’m in good company 🙂

    peace and love and positive vibes to all of you…

  • Garangwyn
    6 years ago

    DITTO again…and it sounds like none of us are alone. I too also suffer from FMS, IBS, and PLMD as well as sleep apnea (probably all related along with the migraines…) — and for those of us who can’t blame PMS, we wonder if it’s age creeping up on us. Add to that the fact that my mother recently passed from Alzheimer’s — I always have that hanging around the back of my mind. I finally caught my neurologist on a day when he was 100% present (he too suffers from terrible migraines) and told him of my concern about my memory issues — my biggest concern atm…he gave me a coupon and the link to the website where he purchases Petadolex, a brand of butterbur that really works for pain, but can be used for prophylaxis as well. Expensive? Yes. But maybe I can cut down on the Topomax and Lyrica, and I’m in physical therapy to help me to eventually do that. So he’s trying to help. That’s worth something. Even if he’s not always 100% there, if I have researched it and want to try it, he’s willing to listen and discuss it. Pick a symptom and start trying to knock them down or at least pin them down to a certain medication, or the migraines. If nothing else, it will give you something to do when you’re feeling like crawling out of your skin…

  • Writermom
    6 years ago

    Hi, Jennifer! I’m glad you mentioned the Petadolex. That seems to work for a lot of people. At least, that’s what it says. My neurologist recommended it for me. I tried it for 34 days. I began itching and then broke out in hives. We agreed to stop the Petadolex, as that was the most recently introduced product, and it took about 3 weeks for the itching to go away, which it finally did. So, if you try the Petadolex, and don’t NOT try it because of me, watch out for things like this. Just because it is a “natural” product doesn’t mean it can’t have side effects or that you won’t be allergic to it, as I am. And good luck with it. I hope you are in the group that it really helps. Harriet

  • Janet
    6 years ago

    Migraine girl,
    It’s not you…it’s not the medication…it’s the horror of migraines…the postdrome …and the happy euphoria times let me know a migraine is on the way…and your moods…all migraine…I feel like the article you wrote was while you were interviewing me….sad…but this is our life..so we either live around it and silently scream inside because NOBODY but another migraineur has a clue what we live with on a daily basis.

    Love and blessings
    Janet

  • Writermom
    6 years ago

    Janet, thank you for writing this. I’ve had migraines for many years, and just now am learning that all this craziness is due to my migraine illness. Thanks so much.

  • lauren
    6 years ago

    My doctor is currently titrating three kinds of meds, and one for ADD (so GLAD he caught it!–I’m 60 years old). I must report “changes in mood” after changes in dosages. At first it took pages and pages. Slowly I’ve learned to edit, look for patterns, try to get over the disgust and boredom brought on by self-examination. Every time I see a pattern, it’s golden.
    The ADD med is meant to stabilize mood, thinking, and energy. Hurrah! we are directly targeting those frustrating sinkholes when energy, thinking, and mood go south. I recommend to everyone to ask about the connection about migraine and ADD. Meanwhile, the patterns show that my sudden flare-ups of anger DO signal prodrome.

    I’ve always been testy, and I come from a sarcastic family from a sarcastic town. I turned my back on that at 15 when I left, but weeding it out of my behavior has been a life long task. Thus I’m used to thinking of myself as always “becoming,” an ongoing project, not an entity I’d call “the real me.”
    Finding out there are meds to help and that the Dark Side is actually something malfunctioning somewhere has been a huge relief.
    Suffice it to say that after a career as a university prof of English (ended by migraines!), you’ll find me hanging with Henry and William James, the seeker and the pragmatist, not with romantic poets who value mood swings as a sign of superior spiritual sensitivity!

  • write4solace
    6 years ago

    Lauren,

    Thank you for your information on ADD and migraines. I will pursue this possibility with my Doctor, have often wondered about my focus/energy swings being tied to something other than migraines. Also, I appreciate your comments on checking for patterns of thoughts/moods, identifying tendencies. Very helpful! Thanks so much!

  • Chris Hicks
    6 years ago

    This is excellent! Thank you for sharing. I suffer from chronic migraine and I definitely share your feelings. Sometimes I joke that I am the migraine (or the migraine is me). It is most definitely difficult to separate myself, my life, my work, well everything, from the migraine. It infects every aspect of my life. On the worst days I feel as though I have no life apart from the migraine. On the not so worst days I stuggle to focus, to concentrate, to be pleasant, to be present, to see any good in anything, to… on and on. On my best days I try to appreciate the pain free time. I work hard not to think things like, “I wonder when the migraine will return.” or, “If I do this will it trigger a migraine?”. This thing, this disease robs me of my life, it robs me of myself. To be blunt is sucks!

    Thanks for sharing. It is tremendously helpful to hear others’ experiences with migraine. I take comfort in knowing I am not alone. There are many of us out there and we are all trying to be more of us and less of the migraine!!!

  • amf194
    6 years ago

    Wow. Thank you so much for sharing these feelings. I experience very similar symptoms and confusion about what is causing them. The bottom line is that the migraine or migraine treatment impacts my emotions in a big way. During the times that are good, I can hardly recall what the depression and irritability is like. For me, I really need to take advantage of those good times and go easy on myself during the bad. I would like to believe that the disease is causing the deep moods and that the real me is during the good times…

  • agallagher
    6 years ago

    I 100% understand what you’re feeling and have gone through everything you mentioned. I have also recently been dealing with a negativity and anger with this disease that I am very unfamiliar with (I’ve had migraines for 18 years).

    This post has helped me to understand that there are others out there dealing with the same feelings and I just wanted to say thank you for that.

  • Rene'
    6 years ago

    You hit the nail on the head……..and you are not alone. I have to keep telling myself “it’s not me, it’s the disease”. Not bad enough I feel like crap most of the time, I also have to keep reminding my monkey brain that I am NOT crazy, I have a disease that interferes with my brain function which effects the way my body works. So, deep breath…..Make your best life with the circumstances you have. Keep breathing, keep repeating. And remember, you are never really alone.

  • Vicki Eaton
    6 years ago

    Feel the same. So confused what is it all from! Imitrex, topamaxx, Feel super great for two, maybe three weeks, then everything starts going down hill, and the migraine episode starts and sometimes lasts for a few days but lately it is lasting several weeks at a time on an off 4-5 days straight but all the same moodiness, gassy, hunger, no hunger, sleepy, wide a wake, Awwhh! Emotions. And I was just diagnosed two months ago with migraines and never ever taking any type of meds before this it is driving me crazy I don’t like taking meds or even having to rely on them.

  • Julie Davis
    6 years ago

    DITTO…exactly all that I go through..Almost drives me crazy….So much many things to misdirect my thoughts..
    Always wondering..what is causing soo much pain..what caused this issue??
    Thanks for sharing…You definitely are not alone..May we all find relief!!:)

  • Cat Travis
    6 years ago

    I read this with interest because it sounds a lot like me. But I also suffer from FMS and RSD so add those to the Migraines and I don’t know what is making me feel the way I feel. At least for now, most of my day I’m not around people and don’t have to worry how I’ll react any more. Only my dog and cat have to be wary of my moods… and my computer!

  • Nola
    6 years ago

    For me, the worst part is suddenly snapping – blazing anger apparently out of nowhere. I just keep reminding myself that, generally speaking, it’s not anything someone else has done – it’s the migraine. Of course, the frustration level becomes particularly high when I can’t find a word when speaking.

  • juanitaschmidt
    6 years ago

    I sure can relate to everything you said. some days I don’t remember what I did the day before.It is scary to me.Is something else causes memory lose or is it related to my migraines.I’m never certain the pain,saddness,the energy bursts,completely tired and many more things is from the medications I take for prevention or I’m I losing my mind.I have so many ups and downs in one day.It is like riding a rollercoaster all the time.I just want to get off.I don’t say anything at work because I always hear “I have a headache too or I’m so sorry.” I don’t want anyone to feel sorry for me.I know that sounds harsh but I just want to feel normal again.Thanks for listening. Love, Juanita

  • sandramhill
    6 years ago

    You just described me! Everything you said. I go through it all. You are not alone. I’m praying for you. Thanks for sharing! Sandy

  • Linda K.
    5 years ago

    Thanks, Sandy. We all need to pray for and support each other. It’s a tough disease that nobody understands, most of all us!

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