When you are a new migraineur it can get overwhelming with all the things you have to learn about your condition to help better manage your pain.  If you have migraines your doctor will often prescribe preventative medication to help be in better control of your migraines and although medication usually will help the lifestyle tips you get from your doctor are not always helpful or even necessary to make.  It can be difficult for anyone who has never experienced migraines to give good lifestyle tips and sometimes people have your best interest at heart and really want to help but despite their best efforts the advice they give you will never work.   Managing migraines can feel overwhelming at times because there is so much to learn and not everything you will learn from your doctor but sometimes the most helpful advice is not given by your doctor and is taught by other migraineurs. If you are a new migraineur and are feeling overwhelmed here are some things you need to know when embarking on your new migraine journey.

It doesn’t end at head pain-  Migraine is often mistaken as a bad headache but what people fail to realize is migraines aren’t always followed by head pain and sometimes the warning signs are not head pain at all.  When I feel a migraine attack coming on the symptoms I will have are jaw pain, shoulder pain, and head pain that doesn’t come until I have a full-on migraine which won’t be until much later. Migraines are excruciating and have a lot of other neurological symptoms that not just head pain such a feeling nauseous, dizziness, or sensitivity to light, and sound that we all need to be aware of to know when they are coming on so we at least try to prevent an attack before it’s too late.

Medication doesn’t cure migraines-  Migraines are invisible and when someone is taking preventative medication and having some good days the first thing people often think is that our medication cured us of our pain.  Preventative medication helps you have less migraine days but it will not cure them and there will still be bad days. Medication has made some people pain free but for many all it does is make their pain bearable so you can do more of the things you love. My medication has decreased my headache and migraine attacks significantly from taking it down from every day to only once or twice a week which still sounds like a lot and it is but even the smallest change can make the biggest difference. The year we were searching for a medication that worked for me most days I was very depressed because most days I could barely get out of bed and the days that I could my energy was very low and I didn’t want to do much of anything.. I still have high pain days where I can’t do much of anything but it’s not like what it was and I have way more low pain days than I ever had before.

Sometimes medical professionals don’t understand- Migraines are invisible and the only people that can truly understand are other migraineurs.  Even doctors who treat them don’t fully understand and it can be difficult for migraineurs to explain the debilitating pain to their doctors so they can start treatment that will give them some relief.  Sometimes doctors blow off people with migraine or headache disorders when they can’t find a medication and tell them that there is nothing they can do and to just deal with. Migraine is not one of those things you can just ignore but you can barely function when you have them and if only more people understood that it would bring more comfort to migraineurs and less people would become depressed. Luckily I have never experienced this but a lot of people have had awful experiences with being blow off by medical professionals and have to find other ways to manage their pain until they can find someone who listens which is not always easy and can take years.

Build a community-  Friends and family can be very supportive of those living with a migraine or headache disorder and truly want to help but they can only do so much. Sometimes it can be hard to talk about pain with someone who has never experienced it which why it is so important to build a community of like-minded people. I love my migraine community and have learned so much from them on how I can manage my pain but the most important lesson I have learned from my community is that I am not alone even if sometimes it feels that way and there are more people that have been where you are or going through something similar than you think. When you are struggling to build a community of people who do get it can bring you comfort during the hard days which sometimes is all a person needs but can be difficult for someone without migraines to do. Depression is common amongst people with migraine and headache disorders or type of chronic pain so whether it’s a meeting up with a group of friends or it’s online building a community is important for beating depression and coping.

Yoga doesn’t cure migraine–  If you are a new migraineur or a veteran migraineur then you probably have heard have you tried yoga? Exercise can be tricky with a migraine or headache disorder because it can either help or worsen your pain. Yoga has been proven to help people living with migraine or headache disorders but what people fail to understand is that it can only help you manage your condition and will not cure it. Some people who have more severe pain are on bed rest nearly all the time and can’t even do yoga without it triggering an attack so I never suggest this because you don’t know who can tolerate it and who can’t or if they are even physically capable of doing yoga. I do a lot of pilates and some yoga stretches but for the most part, I don’t do yoga since a lot of the moves I am physically unable to do so when people suggest this I just roll my eyes because it’s not an option for me.

Sometimes you have to give up activities- When you are a new migraineur there is nothing more discouraging than having to give up an activity that you once loved and now worsens your pain but sometimes for less pain, you have no choice Every migraineur has experienced this and as depressing as it is you have a choice to sit around and mope about everything you can’t do now or accept it and find new activities you can. You can feel sorry for yourself all day long but it won’t change anything and the sooner you are willing to accept that and move on the happier you will become!

Sleep is a hit or miss- You can never plan for when medication isn’t going to work or when you have a migraine attack. Migraines can happen at any time of day and in my experience, it’s usually not convenient timing but often come around at 3 a.m. disrupting your sleep. When you have a migraine or headache disorder sleep is a hit or miss and sometimes you might sleep ten hours for several weeks in a row while others you will get on average of four hours a night for three months but regardless of how much you sleep you’re still exhausted. It’s honestly annoying to not be able to have a reliable sleeping pattern no matter how much you try but you can manage it and get the sleep you need by not fighting naps when you haven’t been sleeping well or go to bed earlier to improve your chances of getting more sleep.

Know your triggers- If you have migraine or headache disorder and want to have less pain you can’t be winging it but need to know your triggers! If you figure out what triggers when it’s too late it could be several hours up to a week before you can get rid of this miserable pain. Prevention is key with migraines and headaches and the only way you are going to know what food and scent triggers you have is to make a list of how you feel when you smell and eat certain things. Some products will not make you feel so great and others will make you feel awesome! Stop using products that make you feel miserable and use more of what makes you feel amazing!

Coffee doesn’t cure migraines– When you start to have migraines one of the first things people often suggest is to drink more coffee and do more Yoga! Both caffeine and Yoga can help manage a migraine or headache disorder but it will not cure it like a lot of people think it does. Caffeine helps me manage my headaches and migraines but for some people, it can worsen pain and they have to avoid it so I never suggest this to someone with migraine or headache disorder because it’s not always helpful.

You may become forgetful- I am very consistent with taking my migraine medication but when not so much when it comes to remembering to taking my seizure meds and I forget doses all the time. Luckily even with all the missed doses, I have had I haven’t had any problems with seizures but I blame all my bad pain days for my forgetfulness. I can remember to take my migraine medication easily because it’s giving me less pain but my other medications are a little more difficult to remember because I haven’t had any real consequences from it. I am starting to getting a little bit better with remembering my other medications and what has helped me is writing it down and setting alarms for when I need to take certain medications.

When you have migraines there is so much you need to learn to have less pain but don’t feel like you have to learn it all at once. Learn as much as you can but take your time with it and learn from others who have been living with it for years because it can get overwhelming to try and do everything on your own. I am always so amazed at what I have learned from other migraine bloggers to effectively manage pain that I would have never come up with on my own.  A community of like-minded people that have some understanding of your pain can be a huge comfort and sometimes that’s all you need to get through it. Migraines are frustrating and there is nothing I can say that will guarantee you pain relief but even if I am unable to help I might be able to find someone who can or just have a chat so you don’t feel alone. You can get tips on how to manage migraine and headaches from people who don’t experience them but in my experience, the people who do have them will give better ones, and talking to someone that knows will be one of your biggest tools for learning to cope. Are you a new migraineur? What would you like to know about living with migraines and if you a veteran migraineur what have you done that has helped best manage your pain?