I seldom share very personal stuff on this blog. I feel it’s not the place for it. Plus, you come here to get ideas, not to read about my life! But my husband encouraged me to share this experience here. I’ve thought about it for 2 weeks now (and even had this post sitting as a draft for days) and finally decided to take his advice. I have a world-wide audience, and I think his thought is that maybe my story can help/inspire someone else out there. My thoughts are maybe you’ll understand why this little bit of the internet has been doing repeat and infrequent posts for the last little while.
Disclaimer: If you choose to read this big ol’ long story, I ask that you do not offer advice. Unless you have some miracle cure that guarantees healing, I don’t want to hear it today. Most likely, I’ve heard it before and tried it (I literally have tried everything). I don’t mean to be rude. I know people are good-hearted and just trying to help, but my head is spinning, and I can’t handle it at this moment. Thank you!
I have chronic migraines. (“Hi! My name is Angee. And I’m a chronic migraineur.” HA) It’s been 2 years of almost constant, daily migraines. This is my story.
I had headaches here and there growing up, but no more than any other child, in my opinion. The first time I remember getting migraines was my freshman year of college. I remember missing class a couple of times because the pain was so bad! I think it was the summer following my freshman year that my mom took me to a neurologist. From then on, I would get them a couple of times a month, nothing too big. It usually had to do with hormone fluctuations and sometimes stress. And this is how it was for years.
When I got pregnant in December 2010 with my Little Guy, the migraines came on really bad. I’m talking daily. It felt like someone was constantly hitting me over the head with a hammer, I couldn’t sleep, and I threw up more times than I can count (not associated with the normal 1st trimester nausea). After a couple of weeks of this, I called my OB to see if there was anything I could take that was safe during pregnancy. He told me my normal migraine medication was fine. I was allowed to take it every 6 hours, which I did. By the time 5 hours had rolled around, the pain was getting intense again, and waiting for that last hour was almost unbearable. I took this medication around the clock. It never took the pain completely away, but took the edge off so I could “function.”
I learned that migraines during pregnancy are actually pretty common, although I have never had them during my previous two pregnancies. I was also told they let up during the 2nd trimester, and then quite often come on again during the 3rd. I hung on to that hope. Well, things turned out very differently for me. They didn’t let up during the 2nd trimester; they continued constantly… into the 3rd.
The morning I delivered my Little Guy was rough! I had one of the worst migraines I have ever had. Nothing I did relieved it; in fact, it seemed to be getting worse as the day progressed. I had a crazy delivery later that day with my Little Guy: Labor lasted less than an hour, and I almost didn’t make it the hospital (I delivered in the triage room)!! And the migraines continued. In the hospital, the nurses wouldn’t let me take my meds so the migraines got worse and worse. I finally had an emotional breakdown–my Little Guy was having some health issues and I hadn’t seen him for 8 hours, I couldn’t think clearly because my head felt ready to explode, and of course, all the pain that comes with delivery didn’t help. I still feel bad for the poor nurse who witnessed that. Finally, they decided to call my OB, who got upset with them and told them to give me what I needed.
My OB told me that the migraines would go away after delivery, but they will sometimes last for 2 weeks post-delivery. Well, 2 weeks came and went. No relief. 4 months came and went. No relief. 6 months… When I called my OB for another refill, they told me it was time to see a neurologist. I was having migraines more than 20 times a month, and on the days that I didn’t have a migraine, I always had a dull ache.
I found a neurologist that could get me in shortly and started working with him. We tried all sorts of treatments–things that were safe for a nursing mother. I also had an MRI, CT scan, and EEG (weird!). My tests all came back normal. And none of the treatments worked. Plus, I didn’t like the way some of the meds made me feel. After 6 months of this and no relief, he finally told me I had tried everything. The next step was Botox. I thought and prayed about it and just didn’t feel good about it so I cancelled my appointment. I also decided I wanted a second opinion.
I found a new neurologist that came with high recommendations and started seeing him. He was very thorough and listened to me. We also tried all sorts of treatments with the same results. And once again, we came to the conclusion that Botox was the next step.
During this time, I started to have some other problems and had to begin working with my OB again, as well. He, too, performed a bunch of tests. And once again, everything came back normal. (I want you to know that I love my OB. I feel like I’ve painted this negative picture of him, telling me all these things that aren’t true. He is very knowledgable and caring. I have just been an “abnormal” patient this round.)
Everything shows that I am healthy! No one has been able to figure out why I haven’t responded to any treatments. Not just medications either; I’ve tried everything I can think of, including more natural approaches. I’ve even made changes in my diet and sleep schedule. My first neurologist told me that because I delivered so quickly, my hormone levels dropped very fast, and most likely got stuck. It can take about 18 months post-delivery for my body to work itself out. That puts me at February 2013!
So, that takes me to 2 weeks ago. I had a huge decision to make. After A LOT of thought, tears, and prayers, I felt a lot of peace and decided I wanted to try the Botox. I was scared–more scared than I have ever been in my life. I am deathly afraid of needles. But I figured, Why not?! If it works, I’ll feel better. And if it doesn’t, then I can go on with no regrets and know I tried everything.
So, on a Friday morning, my husband and I headed out for me to get poked 31 times with needles. Not my idea of fun! It went well, I guess. It wasn’t as bad as I thought it was going to be, honestly. The doctor explained everything, answered all my questions, and was very good through the whole procedure. I felt very comfortable with him doing this to me.
For those who are curious, here’s how it worked:
I laid down on a table, and he started with my forehead. He’d poke me once, then squirt the solution in. That part was uncomfortable at times and downright painful at others. My husband said he then pulled the needle out, put some gauze on the spot, and gently rubbed it in. That part didn’t hurt at all. My husband and the doctor made me laugh through it all (my request for my husband and one of the reasons I married him in the first place!), and I had my I-pod on with relaxing music (and I held/squeezed my husband’s hand through the whole procedure). The doctor would then prep me for the next poke. I stopped counting after the first 4 pokes. He continued on to my jaw lines–in my head, not on my face. I then moved to a chair, where he did the back of my head. He did a couple on the back of my head and a bunch on my neck. And then I was done. I had tiny dots on my head, but no swelling (the dots look like bee stings so they are not noticable).
The rest of the day was okay. I had a constant soreness in my head. I finally figured out how to describe it to others. You know the pain you have after you have the flu shot? It felt like that at every spot where I was poked. Yes, all 31. I woke up slightly sore on Saturday morning. And Sunday was fine, as far as soreness goes.
So what now?! We’re not really sure. Everybody reacts differently. He told me I would most likely have migraines through the weekend–most people do (which I did). Then, we’re hoping to see improvements. Now, this treatment will not take all the migraines away. This first time, it should reduce the migraines 20%. For me, that means I will have about 6 days this month with no pain. The doctor’s plan is flexible, but most of the time, they have you go back in at 3 months to do another treatment, which reduces the migraines even more. You do that for a year, at which point, the migraines should be down to about 50%–for me, meaning I would have about 15 a month. I really don’t know the long-term plan. We’re not sure what we’re going to do, even in 3 months. The hope is that the Botox I just had will knock everything back to normal, and I’ll be able to carry on with no more treatments. Maybe this will be my “cure,” maybe it won’t. Some people don’t respond, and I may be in that percentage. Only time will tell. So far (2 weeks later), I have seen no improvements whatsoever. The migraines have continued daily.
I’ve had a lot of questions about my pain so here’s a bit on that: I have had migraines just about every day since December 2010 (yes, that’s almost 2 years). Some days, the pain is simply a dull ache. Other days, it’s so bad, I’m throwing up (that happens a couple of times a week for me). I have one medication, the original one prescribed back in the day, that takes care of the worst pain. Other medication (including OTC migraine) does not work for me. Currently, I wake up every morning with a headache. After eating breakfast, the pain lets up a bit, and I can get through a pretty productive morning. By noon, I can feel one coming on. Sometimes I take meds then; sometimes I don’t. On the worst days, I try to lay down or “rest” in the afternoons. It’s not always feasible. The 4:00 hour seems to be my worst time. I’m just exhausted by that point, and it’s also my busiest time of day–kids getting home, dinner preparations, etc. I feel bad because it’s also the time my husband gets home, and I’m just not at my best. We then plug away through the evening. And I usually go to bed with pain, as well.
I am constantly tired. I am spacey and forgetful. Sometimes I feel like I’m living in a fog. My kids and husband are amazingly patient with me. I am a changed mother and wife. We are all adjusting. I’ve learned to be easier on myself. I’ve learned that it’s okay to say no. I try not to let the guilt and discouragement eat me alive. I try not to let others’ judgements get to me. I’ve learned that everyone has a story; a trial; a weakness. I’ve learned to enjoy and grasp the moments (yes, moments) that I feel good. My house isn’t always cleaned to my level of perfection, but that’s okay. I carry on. I get out of bed every day and live my life. I have a smile on my face every day. I continue to laugh and find joy. I try to function “normally.” God has blessed me with the ability to do His work. He has BLESSED me in so many ways, and I am humbled by His love. I wait for His healing grace.
So, that’s my story. I feel it’s so trivial to share when there are so many others dealing with much, much more. But it’s mine. And that’s what’s important. Feel free to comment, share your own experiences, etc. I don’t mind talking about it.
Just don’t offer advice. 🙂