Given that June is Migraine Awareness Month, I was re-reading a post I wrote last year on migraines so I could see what else I may want to include when I write a new post. But I also realized that this says SO MUCH that it is worth reposting.. And not just re-blogging but actually copying and pasting (with few minor edits) it into a NEW post for those of you who haven’t gotten the chance to read my thoughts/experiences with daily chronic migraines. One other quick note- I have been so focused on ulcerative colitis that I have yet to find people who share my experiences with debilitating migraines. I am always open to talking so please feel free to email me at Marisa. IBD@gmail.com or send me a tweet/message on twitter @JournalingIBD.

Written on September 15, 2013… 

I want to talk about something I have mentioned a lot on this blog but never went into in depth which is another invisible illness:migraines.

I was diagnosed with chronic daily migraines when I was 16 years old which basically means that I’ve had a migraine pretty much every single day for over ten years. This may sound like a joke as most people who suffer from migraines get them a couple times a month, but for me, I have them every day. Some days are a lot worse than others and I pretty much go by the rationale that if the pain isn’t radiating down my neck that it is a “good day.”

Like most things in my life, the pain I have dealt with over the years from migraines has impacted me more than I ever realized. I was always under the impression that migraines and headaches didn’t matter because what I was going through with ulcerative colitis was far worse. After all, you don’t need surgery for migraines. There are medicines but I wasn’t going to bleed out and potentially die if I didn’t adhere to what my doctor was saying. Anytime I was told to go to the hospital for migraine pain, I refused because I had so many other hospital and ER admissions for “REAL” things (like blockages, flare ups, surgery complications, etc) so to go in to this traumatic place for a seemingly minor thing was something I would have to be dragged to kicking and screaming.

I have seen a few neurologists over the years who all gave me the same preventative medication speeches and options. Most of which, I was left feeling like I already had enough things to worry about with IBD that I couldn’t layer on any self inflicted issues that could potentially be caused by the side effects of migraine medications. I began to feel comfortable with two preventative migraine medications after researching and understanding the side effects and initially being put on these medications by a doctor who was incredibly knowledgeable, calm and who I felt understood the complexity of my health situation. I didn’t feel like he was pushing drugs on me and therefore, I trusted him and started what he advised. Because my body continued to endure so much more because of ulcerative colitis, my migraines were never under control.  I did trial and error with a wide variety of other medications including getting 30 something botox injections in my neck and scalp (twice) as well as painful shots in my thigh but always felt awful on any other preventative medications so about four years ago, I decided I was no longer going to put myself through this.

I always attributed migraines to the stress of IBD and to a large degree, I still do. After I continued to experience such debilitating migraines even on preventative migraine medications, I just couldn’t handle the thought of putting more medications in me when I really and truly felt like if my body was just given a break from surgeries and blockages and hospitalizations that I would be able to breathe a little.

While migraines are in a completely different family as IBD, they are still incredibly debilitating. I tend to compare everything to what I had to endure with my GI track so in a way, I think I just accepted this pain as a way of life. It became my normal. But I cannot deny that it has impacted my life in ways I wish it didn’t. I have a tremendous amount of sleeping issues that are affected by migraines. As most of you know, if you’re in pain it is pretty difficult to fall asleep (especially for someone who can only fall asleep and stay asleep if the stars are aligned).

I did whatever I could to control it including taking an incredible amount of pain killers for years. Because of IBD and all the surgeries, procedures and complications that resulted from it, my drug tolerance was through the roof. The amount of pain medication I required was unheard of to most physicians. Doctors would look at me and have no idea how I was even functioning, let alone completely coherent, on the amount of pain meds that I needed to take in order to get through the day sometimes.

I can honestly say I never ever would have finished college if I hadn’t taken the liberty of self medicating my way through it because of the debilitating pain I was in. I never would have had a social life or been able to leave my house most days. I was going to school with pain patches on! All I ever wanted to feel was “normal” and after being diagnosed with ulcerative colitis at the age of 13, and then dealing with migraines every single day, I felt the farthest thing from that. All I wanted was to wake up and feel no pain. For one day, all I ever wanted was to wake up after a good night sleep, feeling refreshed and pain free.

Migraines are an invisible illness that so many people suffer from. There are many causes to migraines, and many natural ways that people can go about trying to alleviate some of their pain. My last neurologist appointment, I was told to take 500mg of magnesium, riboflavin, and butterbur. I have been taking magnesium and once it is time to re-order vitamins, I am going to incorporate the riboflavin. I have heard great things about butterbur (petadolex) but given that it can take about four months to work, I don’t really have the money to invest in it right now so I am putting it on the back burner. Feverfew is another natural remedy that I was told to try a while ago. It didn’t help me but I do know others who it has helped and it is relatively inexpensive and easy to just incorporate into your life (can’t hurt in my opinion.)

My advice to anyone who suffers from migraines (along with any invisible illness) is to do what you feel is best for you. Find a neurologist that you can trust because the odds are, you are going to need to have a relationship with this doctor and communication is key. After more serious things are ruled out (tumors, etc), and your doctor suggests certain medications to you, do your own research but trust your doctor first. If I hadn’t experienced all that I had with ulcerative colitis, I would be more trusting and most likely be a lot better off. I am who I am because of my experiences (as we all are) but if you are a person who can find a doctor who you believe can help you, do your best to let him/her do their job. And as always, things can be altered a long the way if needed.