Thursday, January 29, 2015

What my chronic pain condition looks like now

 If you asked me about my current migraines and pain condition, i would tell you i "got sick" on Christmas day of 2013. But really i have gotten migraines since the 7th grade. In late October of 2013 they started to become more frequent. Christmas night of 2013 i got a migraine that lasted 4 days, and ended with me at the ER having to get shots. That had happened before, but this time the medication didn't help. So they gave me a second dose, which still only brought the pain down by less than half. Then they gave more. After that they said i could go home or be admitted, there was nothing else they could do for me. I have had a headache every day since then. 401 days. Some days it's not bad, i can take a tylenol and be ok. Some days, most days, 3-6 days a week it's a full on migraine. I have to take abortive migraine meds, usually in combination with other medications for migraines and things like ibuprofen and be in a dark, cool room with little noise and wait for it to pass. My migraines have become classified as "intractable." This means they are often resistant to medication. They can last from 4 hours to 4 days. They cause a variety of side effects that headaches do not. Sometimes i see lights or squiggle lines that are not there. I often get double or blurry vision. I always get nauseated. I become very sensitive to light and sound, and have a heavy black sheet i keep over my bedroom window that keeps my room almost completely dark for this reason. Sometimes my hands and arms tingle or go numb. I sometimes lose my hearing during migraines. The first time that happened was so scary. i was looking at the fan, watching the blades spin and listening to it, trying to focus on the sound and not the pain, and i closed my eyes and then i didn't hear it. I thought it had died so i opened my eyes and i could still see it spinning, but i couldn't hear it. I put my hand next to my ear and snapped and i heard nothing. I screamed and i heard nothing. It lasted less than 2 full minutes but it was the longest 2 minutes ever. We have no idea why this happens. 

 After about 3 months of "being sick" i began to experience other things as well. My hair started falling out more than it ever had. I would have moments where my whole body would hurt so bad and i wouldn't know why. My muscles would be weak and doing simple things like pushing the vacuum would hurt so bad i would cry. My hair loss has slowed down, thank goodness, but i still experience the body pain and muscle weakness. Sometimes my body just feels like it's on pain overload.

I am lucky to have a wonderful doctor who has done everything he can for me. After a few visits he honestly told me he didn't know what to do, but he would find someone who did. He has referred me to several specialists and has referred me for numerous tests. Some I have seen and had done, some i have not due to insurance denying them. My neurologist has been a disappointment, not really listening to me or making me feel like he cares about what i have to say, but I am hoping to be allowed to see someone new within the next few weeks. We have no answers or causes as to why i am experiencing these things. We have ruled out many things, but still have not found a cause. We also have not found a treatment that works well. I have tried and failed several abortive migraine medications. (Those are the kinds you take when you feel the migraine coming on, like imitrex) I have also failed 2 preventive migraine medications. I have even tried several home folk remedies, with no success.

I feel like i have lived the past year of my life waiting. Hoping for an answer and getting nothing. Watching life pass me by as i lay in my bed or on my couch wishing i could get a new head. I have tried really hard to not complain too much, though i'm sure those closest to me would say i failed. I try to hide my bad days and just make it through without bringing down anyone around me. Some days i hurt so bad i can'd do anything but lay down and pray for it to end. And even when it's that bad, i still have to be a mom, and a student, and a product tester, and be productive, and function. I have to live, and be strong for my son. It's the hardest thing i have ever done. Just tying it out has me in tears. But i do it. I have no other choice. 

The past few months I've been working hard to have a healthier mindset. Being in constant pain can take your mind to a dark, dark place. It can make you question why you are even bothering to live at all. I won't live in the dark. I am a child of God who enjoys the sunlight. So on my good days I've been making sure i get out of the house, and work out, and eat healthy, and get to church and bible study, and surround myself with people who are good and supportive. I have lost 37 pounds in just under 3 months, and while i'm not working to be skinny, it feels good to be in smaller jeans. I recently had someone who used to be part of my life talk bad about me because of my weight, and before it would have really brought me down. But my weight does not define who I am. And someone who hasn't been in my life in over two years talking badly about me is not about me at all, it's about them. Part of my healthy mindset has been me asking myself, "How does this ___ make my life better?" If it doesn't, i try and just let it go, ignore it or whatever.

So, that's the story with my health issues and where i am at. 

401 days. It's a long time. But i'm tough, and i know this feels like hell, but God is in control of it all.

If you know someone who suffers from chronic migraines, 15 or more migraine days a month, please read this awesome article "12 Things not to say to a chronic migraineur


Unknown said...

So many people do not understand this!!! I suffer from occasional migraines so I cannot fathom having to do it so often! No preventative meds they have tried were successful?

Unknown said...

So far, no. But i have only tried 2 of the most common meds at 3 different doses. Hopefully soon we will find something that works.