I have hemiplegic migraines. That’s right, I Kate (Zimmer) Vilaranda am a migraine sufferer and I don’t care who knows nor do I care what they think. Phew, that only took about 25 years to say with meaning. You see, for a long time I did care what people thought – A LOT. What if I lose friends because I cancel plans last minute because I get a migraine. Will they still invite me to things because I am that unreliable person. How will my employer react to my migraines and missing work? You know why? Migraines are invisible. Really! It is an invisible illness, as in a chronic illness and condition that significantly impairs normal activities of daily living. What people can’t see, makes it hard to understand, which is understandable.
I never truly knew the impact that they had on my life until May 20th, 2015 when I had to spend five weeks in the hospital on the rehab unit regaining function of my body. I have had migraines since a young age, however, this was a different kind of migraine. A new level. One that I didn’t know existed. When a migraine attacked my body there were the usual suspects that accompanied including the hammer splitting my head open like a melon, which always meant nausea, aura in my eyes, and tingling up and down the right side of my body. But now it’s different.
Living with these have been like another limb throughout my life. When you have migraines you learn to adapt because they are always this elephant in the room waiting to pop its ugly head up when you least expect it. From my experience, you can be as diligent as you want with what triggers you but these monsters in your brain will still appear. It’s imperative to know your body inside and out and know what will trigger you. Your triggers may include foods, the weather, your menstrual cycle, etc. Everyone is different because everyone’s body is unique. Your trigger may not be my trigger and so forth.
From what I have been learning (and this is just recently in my 27 years) is to cut yourself a break. If you are focusing on not getting a migraine, you will most likely get a migraine. Using calming and self-care techniques is highly important. You need to take care of yourself, reduce stress (which is a big trigger) and introduce yourself to ‘you’ if that’s what it takes.
One thing that has also been really helpful that I have just learned to do (also taking me 25 years to realize) was that you need to let go of the FOMO. What is the FOMO you ask? The Fear of Missing Out. I was always the person to push through the pain and not go to bed when I needed to. I would go to events have a migraine with an aura, could not see out of my eyes but pretend and fake it ’till I made it’ because I didn’t want these to rule my life. What I was forgetting is that, if I just went to bed for a few hours, the pain wouldn’t have been as bad and I would have least been able to see.
Another thing to remember is that you should care more about your health than what others think about you. Looking at the bigger picture helped me realize the importance of this. If there were people questioning your reliability, your friendship, etc and the validity of your illness, then do you need them in your inner circle? You are legitimately sick. I would really push yourself to ask this. You are the one suffering and will be for the next few days if you don’t get on top of it right away. People get over things. You will get better faster if you don’t stress yourself out by 1) exhausting yourself and 2) not giving your body the rest it needs.
Things I highly recommend:
Request for an easy open medication bottle. When you have your bad days and only have the ability to use one hand, this will be a life-saver. These are the best way to access your medication with the easy open tabs without straining or fiddling with the cap lids at the most needed time when you are in pain.
If you are a regular migraine sufferer? You should always have on hand your supply pack, which for me include the following:
- Pain medication
- Medication list
- Emergency contacts
- Assisted walking devices (if needed)
Your phone can be the most handy device and used for more than taking photos and snapping your friends now! I have an iPhone and with it comes a health app where you can input all of this necessary information. This is also amazing to track your headaches to find patterns or look back to see if you did something that you triggered your head monster. Your family Physician and Neurologist love this data as well when prescribing your next medical treatment.
There are also amazing online groups that are a wealth of knowledge and an amazing support system.
International Hemiplegic Migraine Foundation
National Headache Foundation (Email newsletters that provide new studies that are being completed on the subject, patient stories, techniques to overcome the daily struggles and having a functioning life).
Sleep. Get on a regimented sleep schedule. You body needs to recuperate. You also need to take your vitamins!
Feel free to contact me to have a chat about your head monsters. With more than 20 years in the ring with them, I have some experience and knowledge. I have been to every western medical, alternative medical, new age medical professional specializing in them.