There are several migraine symptoms you can read on tons of websites on the web. Just like you, I’ve read them and exclaimed out loud, “Yes! I have that one!” and then realize it’s not actually a good thing, but at least provides answers. I think that makes us friends, even if we’ve never met. Most of my friends, these days, seem to be migraineur’s I’ve never met and live all over the world. So what are these symptoms that seem to bring us all together?
The image below from MigraineBuddy.com shows the phases of migraine and associated symptoms. How many symptoms do you have?
5 Worst Migraine Symptoms
I’ve compiled a list of some of the worst migraine symptoms, in my opinion. Some of them might not affect you, thankfully. On the other hand, you might relate 100%. I honestly tried to list the symptoms from least to worst, but I just couldn’t. They affect me equally and I decided to just list them. Every migraine is different and one symptom may be worse than another, while the next migraine is quite the opposite. Hence, the frustration. Here they are in no order:
— The Daily Migraine (@thedailymigrain) December 22, 2015
Thankfully, nausea is not a regular symptom of mine. I say thankfully because when I do have nausea a severe migraine is triggered that requires a trip to the emergency room. I do not visit the ER unless I absolutely have to. Going to the ER is awful and it causes me anxiety because of past experiences. Granted, not all ER trips have been traumatic because of doctor/patient experiences, but if I’m honest, most of them do.
You’re probably wondering why nausea would trigger an ER visit for me. I have a rare type of migraine called Hemiplegic Migraine (HM) that includes stroke-like symptoms and people, even doctor’s, initially mistake them for strokes. For whatever reason, nausea catapults a HM to a more severe level that requires IV rescue medications. I have other migraine and headache types, like Primary Stabbing Headache, Chronic Daily Headache, Basilar Migraine, Hormonal Migraine, and Migraine with Aura. All these types of headaches and migraines will sometimes trigger Hemiplegic Migraine if they are painful enough. But nausea? Nausea will almost always trigger HM for me. So now you can see why I have it listed as my top 5 worst migraine symptom. Do you always have nausea with your migraine?
2. Mood Changes
— Cindy (@1028Cindy) December 29, 2017
If you ask any friend or family member, I’m a cheerful, happy person naturally. What’s been one of the most interesting changes migraine has created in my life is mood changes. When I start to go through migraine Prodome (1st stage of migraine), I notice I’m almost a different person. I’m not nice, I don’t want to be bothered, and I’m bitchy! There’s just no other way to say it that conveys the meaning of the different woman I become. This new person hurts people’s feelings by pushing them away and not showing empathy for what I’m putting them through. My husband and teens get the worst of it.
Once I’ve come out of this costume and I’ve realized how I’ve acted for the last 24 hours, I feel guilty. Guilt for what I might have said or how I acted and also for the negative emotional impact I might have made on them. I used to joke and think it was funny to turn into this bitchy person, but as I grow older I’ve realized that it’s not funny, it’s actually quite sad. With that realization I have been able to catch myself before I make a comment or get angry.
Talking myself down has done wonders for me and my guilt is becoming less and less as I get better at self-talk. When I don’t catch myself on time, I will quickly apologize and make amends on the spot. Whoever my crankiness is directed to usually appreciates the apology and will be more understanding as to why I am so angry or seem ungrateful. Not always, but more times than not. Have you found yourself in a dicey situation you had to apologize for due to migraine?
3. Light/Sound/Smell/Touch Sensitivity
Since chronic migraine made himself comfortable in my brain, I quickly realized my brain is highly sensitive. Things that wouldn’t normally bother me….bother me. It’s not nagging, though, it’s often painful and disabling. After years of chronic migraine, my sensitivities have overlapped into everyday life. I no longer have sensitivity with ONLY a migraine, it’s a daily superpower. When migraine is approaching or active, each of these senses are at their highest sensitivity.
At least I have new glasses to make my migraine more bearable pic.twitter.com/phj8WP38LC
— Fen (@FenstarDeLuxe) August 27, 2017
My phone is always set to a low light brightness and I use a blue light filter to keep my eyes from “burning.” My kids even know to turn down their brightness before showing me something on their phones. I do not use LED lighting in my home due to brightness. I wear sunglasses even at night. None of these tactics are to prevent migraine, like in the past, but because the light genuinely hurts even without a migraine present. Light sensitivity at it’s finest.
For many migraineur’s I’ve met, light brightness is a serious symptoms. Some of my friends are unable to work or leave their homes because UV lighting triggers migraine for them, even with the slightest exposure. While UV lights are not a trigger of mine, I still cannot handle a room where the UV light is flickering noticeably. Same goes for sunlight that flickers in and out on the highways of North Carolina. It creates a strobe-like effect, which sometimes triggers hemiplegic migraine for me. I often find myself not only closing my eyes on the road, but also using my hands as a visor since I can still “see” the strobe-like sunlight through my eyelids. Another strobe-like scenario is the ceiling fan. Sometimes I need to hide my eyes from the ceiling. Fun times.
Oddly, if I’m in a lit up room the light does not bother me. Turn off all the lights, but one, and that one light is very irritating and burns my eyes. Strangest thing. It seems it’s the contrast of light to dark, it’s either all or nothing for me. What are your light sensitivities? Do you wear migraine glasses?
My new best friend: noise cancelling headphones. They aren’t just for listening to music or surround-sound quality movies. I often use them with nothing playing just to block outside noise. Everyday noises are what bother me most before, during, and right after migraine.
The ceiling fan bugs the heck out of me, it’s annoying and if loud enough, painful. Don’t get me started on baby crying! I thank the stars everyday my kids are teenagers now. I can’t spend too much time around small dogs, they have the WORST high-pitched barks. Sam, my dog, has a low pitched bark, but definitely loud. Funny enough, I can’t stand someone chewing if I’m not chewing with them. Maybe that’s not so much migraine irritant, but highly annoying. When I have migraine, I get annoyed VERY easily. There are SO MANY sounds that bother me or hurt my ears, I’m sure you can list much more. While I can handle annoying sounds, it’s the sound that causes pain that I have to eliminate somehow. What sounds do you find painful?
Out of the four sensitivities I am discussing today, I think smell is the worst. I smell things before anyone else in my home and annoy the heck out of my husband because of it saying I’m a “bloodhound.” I just laugh, but really it’s the one that affects me most. Sunglasses or closing my eyes help when things are too bright. Can’t really get away from a bad smell until it’s gone. I always ask those around me if they smell what I smell, because with my migraine I get fantom smells. Fantom smells are often an alarm that I will have a migraine soon, so I always double check if I can.
Funny story…for a couple days I kept smelling something rotting. It was awful, but I was the only one who could smell the stench. My husband and kids would look at me like I had a second head growing every time I’d scrunch my nose and make a comment. I was getting pretty upset that no one believed me. This was early in my migraine journey that this started happening. It wasn’t until later that we’d realize this is a migraine phenomenon. I smelled rot as if it had been rotting for days in a closed room. After almost a week, my husband finally began slightly smelling something rotting and asked me I knew where it was coming from. I just looked at him like he had lost his mind. I had been arguing with all of them for days and nobody believed me. We finally found it and I was finally recognized for my migraine superpowers. The “it” was a rotting orange hidden behind the couch. Another time it was a dead mouse. So gross!
Do you have a funny story about something you smelled before anyone else?
Painful touch is not my worst sensitivity, but during a more severe migraine, it is. All along the left side of my body, from head to toe, muscles become highly sensitive. A light poke on my shoulder or on my back will cause cringing pain. The pain will radiate and remain sore for an hour or two. When play fighting with my kids or with my hubby, they always ask before playfully slapping my shoulder, “Is that your left or right side?” They don’t want to hurt me, so they ask me first. It’s endearing. Over the years they’ve learned their lesson! You should see my reaction when someone who doesn’t know touches me with light pressure. They probably think I’m overreacting, but I promise you I’m not. It can be very painful. Even at a low level painful sensation, it’s still hurts.
Are you one of those people who cannot stand the tag inside the collar of your shirt? There are a lot of us who remove the tags, even as adults. Because of my sensitivity, it hurts and almost burns when I feel one digging into my neck. It’s not just children who get annoyed. From many conversations I’ve had with other migraineur’s, companies should learn from Haynes and swap out tags for printed labels! Maybe you understand?
4. Memory & Concentration
People with migraine may have poor concentration, discomfort, yet at times feel happy in contrast to seizure patients pic.twitter.com/0yvLULWCIC
— The Brain Forum (@TheBrainForum) November 15, 2013
I think a lack of concentration and memory make the list of the most talked about symptoms of migraine. The hard part is determining wether or not migraine itself or the medications we take is affecting our ability to think. I’ve gone through months to a year where I did not take any medication and had very difficult days attempting to pay attention in class or at work, not remembering what I learned or read yesterday.
In the online migraine groups I’m associated with, many migraineur’s discuss feeling scared they would get Alzheimer’s Disease at 38. Then someone would pipe up and suggest they check the side effects of their medications. Most of the time medication was the cause and once they tapered off, they found the brain fog lift and their memory and concentration in tact.
Unfortunately, medication is the main source of concentration and memory deficits for most. This leads to migraineur’s trying several medications before they find one that does not affect their abilities. Sometimes the benefit does not outweigh the risk. Check side effects of your medication on Drugs.com. If you know for sure medication is not the cause of your concentration and memory deficits, please speak with your doctor.
Reading & Memory
I am an avid reader, I read several novels a week. Just this week I began reading a series of novels and by book 3 I had already forgotten the main character’s names and relationships in book 1. I had to reread the summary to remember. This is very common for me. I’ve tried purchasing a new book, only to find out I had already read it. I did not remembering reading the book, not even a little. It’s scary sometimes.
In a conversation with my daughter, she was talking about one of her favorite cats we used to have. She was going on and on and for the life of me, I did not remember him. I tried and tried to grasp at any memory. She looked at me, terrified, that I couldn’t remember not even one memory. Once I saw a photo of him, did the memories come crashing in. It was then that I realized my memory and concentration were affected by chronic migraine. With an already declining ability to concentrate and remember things, my new medication also has a side effect of brain fog. I’m sure that adds to my deficits.
— Linda Peters (@Evergreen_Linda) August 18, 2015
According to HealthCentral, Teri Robert writes, “Aphasia is is loss or impairment of the power to use or comprehend words. It can start during the Migraine prodrome phase and continue through the headache phase.” I have aphasia on a daily basis. I have chronic migraine, so for me, aphasia is also chronic, especially since I have a pain level of 2-3 everyday upon waking. I notice as the pain level rises, the aphasia worsens. If you find yourself using the wrong words or the inability to find the word in everyday conversations, I urge you to read through the article, Those Frustrating Migraine Symptoms – Aphasia, by Teri Robert and speak with your doctor. I have many stories about moments with aphasia, feel free to comment below if you have any questions or scenarios you think might be related.
Memory and concentration are necessary to go to school and have a successful career. Because I have these deficits and could not maintain a satisfactory output, I had to quit school and lost my career a few years ago. I no longer work full-time and rely on freelance work to help keep us afloat. Even then, I have let many freelance customers down with extended deadlines. I get tired of saying, “I’m sorry.” Even though my career is at a standstill, I still keep hope that I’ll be back in an office chair filling up excel spreadsheets soon.
5. Depression & Anxiety
— Healio.com (@GoHealio) October 26, 2017
While depression and anxiety are their own illnesses, I have depressed thoughts and anxious moments and days. I do not have a clinical diagnosis of depression, nor anxiety. I have symptoms of these illnesses when a migraine reaches a pain level of 4 or above and is active two or more days in a row. Because my mood (#2 above) is affected with migraine, imagine going more than two days with this type of attitude. Eventually I begin to feel depressed and have suicidal thoughts (without being suicidal). I think things like, “My family would be better off without me,” and “I hate my life, I’m in so much pain.”
As I mentioned before, I am a naturally positive person. If I’ve been in pain for a couple days I start to think negatively. Those negative thoughts make deep roots and take me to a dark place. Once the migraine has released and I’m feeling more myself I often question why I felt so depressed in the first place. It isn’t until the next more painful migraine that I remember and go down the rabbit hole once again, repeat, repeat. My heart goes out to those who live in the rabbit hole everyday, I hope you find peace and happiness.
I never had anxiety before I started having migraines. It wasn’t until I had many difficult emergency room visits and doctor’s visits that the anxiety started to creep in. I only have anxiety attacks when I know a migraine is too painful to treat at home and an emergency room visit is inevitable. When this happens, I feel like crawling up my own body and running out of the ER with the IV still in my arm. Self-talk, in these moments, will sometime help to calm myself down so I don’t do just that. If that doesn’t work, anti-anxiety medication helps. I DO NOT like the feeling of being anxious, it is one of the most uncomfortable feelings I have ever lived through. I have much empathy for those who live with anxiety everyday.
Do you have symptoms you feel should have been in the Top 5? Which symptom is a non-factor for you? What would you trade it with? There are so many symptoms listed in the chart above and SO MANY more that aren’t. I’d add hemiparesis to that list for sure if I was considering Hemiplegic Migraine (HM). I was diagnosed with HM in 2009 after symptoms appeared in 2004. You can read about my journey with HM through out this blog, but also on About Achy Smile.
#Migraine attacks can happen out of nowhere or be triggered by everyday life. The American Migraine Foundation works to spread awareness of this debilitating disease and to help those affected #MoveAgainstMigraine.https://t.co/9xdJXFxcWU pic.twitter.com/JE5qRNlHmY
— AMFMigraine (@amfmigraine) January 9, 2018