- Brain Imaging
I can’t believe it’s been over five years since I’ve had a brain MRI. The neurologist wants me to get an MRI every five years just to check and make sure everything is still fine up there. 🧠
I had childhood epilepsy (which I grew out of), so I had frequent MRIs as a kid. Being my perfectionist/anxious self, I wanted to ace every test. I would work myself into such an anxious state that I couldn’t keep my head still. My parents would sit next to the MRI machine and tell me to relax. Is there anything more unrelaxing than being told to relax? It felt like it took forever to get a clear image. ⏳
Thanks to Headspace, I have the tools to handle anxious moments. I’ve realized that focusing on my breathing and thinking about snuggly puppies way more calming than trying to relax. 🧡
Because I was able to relax, I was able to keep my head still. Wiggling my fingers and toes every few minutes also helped release any nervous energy. I actually found myself falling asleep from the rhythmic thumping. 💤
I’ll be spending the rest of the day drinking lots of fluids to flush the contrast dye out of my system. How do you manage anxiety during medical tests/appointments? 💦
- Sleep Study
Apparently, telling my doctor that I’ve had insomnia all my life but not now led her to recommend a sleep study. Initially, I was supposed to do an overnight sleep study, which would be more like an awake study cause there’s no way I’d sleep well in a strange place with people watching me. Thankfully, my insurance approved the at home sleep study. I think it went well except for when Lucy wanted to play with all the fun wires at 4 am. 😸
It used to take me hours to fall asleep, but since I’ve been taking Amitriptyline, my sleep has never been better. It’s hard to manage other symptoms when not getting adequate sleep. I mean, managing a chronic illness is exhausting enough without sleep deprivation.
A few things I do to help my body maintain a healthy sleep schedule are:
- Wearing noise-canceling headphones to bed because I am the lightest sleeper 🎧
- Only laying in bed at bedtime or when I have a hibernation level migraine 🛌
- Wearing an eye mask 👁
- Limiting screen time before bed and when I get up to let the dogs go potty📱
- Doing something relaxing before bed (meditating, coloring, watching my favorite shows, etc.) 🧘🏻♀️
What is one thing that improves your sleep?
- About Me
I haven’t introduced myself yet, so here are some fun facts about me:
🦁 I’m a Leo AND an introvert.
✏️ I am left-handed.
😻 I have 3 dogs (Hallie, Abbey, and Finnegan) and 2 cats (Windsor Rose and Lucy).
🐟 I have a reef tank. I am getting an anemone, a coral, and two crabs tomorrow!
🎓 I have my bachelor’s degree in Psychology from Stockton University.
🤪 I am incredibly clumsy. I’ve sustained four ankle injuries from tripping.
⚾ I love watching sports even though I don’t have an athletic bone in my body. Go Phillies!
🐦 I have a fear of birds, and I’m working on it.
🏡 I’m always planning & Pinteresting home improvement projects.
👂 I have two piercings in each ear. I’ve had my second holes pierced twice, and I need the left one pierced again.
🦋 I want a tattoo in memory of my mama, but I’m seriously reconsidering after microblading.
🥇 I won first place in a statewide sewing competition.
📺 I know every word to the early seasons of Gilmore Girls.
🦵I am super flexible. My chiropractor says my knees are like jelly. And I have to make a conscious decision not to stand with my knees hyperextended.
- Ice Pack Review
How many of us have freezers with more ice packs than food?
A lot of us migrainey people use ice/heat as the first line of defense when we feel a migraine beginning. I know I have gone through countless ice packs. Personally, very cold ice packs that stay cold help me the most. Comment below whether ice or heat works best for you.
There are so many ice packs that are more suited for heat, which means they don’t get cold enough. I am going to list my favorite ice packs. Hopefully together we can find the most effective ice packs. Do you have a favorite ice pack?
Headache Hat the Original- this is my go-to whenever I feel the beginning of a migraine. It wraps around the head, but it’s is adjustable, so it’s not too tight. It is especially useful for my hibernation days. I like to pull it over my eyes when a massive migraine hits. I can sleep in it and wear my noise-canceling headphones over it for a total withdrawal from stimuli.
Headache Hat Ice Halo- This is the little sister to the Headache Hat. It provides the same relief as the Headache Hat, but it is more portable and comfortable when moving around. I like to wear it around my neck or as a headband.
Purple Ice Pack by Magic Gel- I often fall asleep with this ice pack under my head and neck. I’m not a fan of wearing it as a hat. I can’t wear anything on my head that’s too tight because it triggers a migraine. But I have two of these ice packs because they get cold and stay cold.
- Grow Through What You Go Through
This quote has been on my mind for the last three days. Three days of waking up with a migraine and three days of acute meds. Typically, I like to accomplish at least one project a day. It could be cleaning out a drawer or deep cleaning a room. The productive days are filled with so much more gratitude because of the unproductive days.
Thankfully, I have learned not to fight these migraine days, resisting pain only makes it worse. I used to feel so guilty on the days that migraine took precedence over living my life. But it’s okay and so important to take care of me. Once I let go of all the negativity, I gained freedom and healing. All of the doubt, criticism, and lack of acceptance were holding me back from feeding my soul.
Migraine advocacy is so important because we only grow through love and acceptance. The truth is that migraineurs don’t enjoy hibernating in a dark room all day, all the ice packs, or the many doctor appointments. If you can’t imagine a chronic illness sidelining you for three days, every day, or weeks at a time, then you should count yourself lucky. That doesn’t make our chronic disease any less real or disabling.
I am so grateful for the things I can do during a migraine and without a migraine. I hope migraine-free days last longer and become more frequent. I enjoy every second of the good days. I am so looking forward to more migraine-free days. 💜
- My Sinus Surgery
It’s the 7th anniversary of my sinus surgery for chronic sinusitis. After a course of antibiotics for a sinus infection, I still had symptoms and was sent to the ER. This was the first time a chronic illness changed my life. This surgery took place after four months of constant sinus infections and pain. So many specialist appointments and trying to pinpoint my allergies. So many rounds of antibiotics and steroids.
Years later, we came to the conclusion that my allergies will never be well controlled, and I’ll always have sinus inflammation.
I had LASIK a year and a half ago. Without the irritation of contacts or the weight of glasses, my sinuses improved significantly. I haven’t had a sinus infection since then and could not be more grateful.
I still get congested and have pain but less often. One of the three ENTs I went to said it could be related to the trigeminal nerve since my sinuses exacerbated my chronic migraines.
I’m still not sure what caused all this pain and inflammation. However, I have learned how to manage the symptoms of chronic sinusitis so that I’m no longer in constant pain.
- Let’s Talk About Rebound Headaches
Tackling rebound headaches (also known as Medication Overuse Headaches or MOH) has been a massive part of getting my migraines under control. Rebound headaches are intense, frequent, and don’t respond well to medication.
The Cleveland Clinic has a good explanation of rebound headaches and which medications cause MOH headaches:
What are rebound headaches and analgesic overuse?
When the occasional headache strikes, most of us take an over-the-counter (OTC) analgesic, such as acetaminophen, ibuprofen, aspirin, or a pain-relief medication containing caffeine. While OTC analgesics can help relieve headache pain they must be taken correctly — or they could actually make your headaches worse.
The overuse or misuse of analgesic drugs — exceeding labeling instructions (such as taking the medications three or more days per week) or not following your healthcare provider’s advice — can cause you to “rebound” into another headache.
When the pain reliever wears off, you may experience a withdrawal reaction, prompting you to take more medication. This only leads to another headache and the desire to take yet more medication. So the cycle continues until you start to suffer from chronic daily headaches, with more frequent headaches and more severe pain.
I think that we’re so used to trying to keep up with everyone around us that we overuse analgesics to get through the day. I never wanted to be the person that couldn’t fully participate in events with family, friends, or work. The reactions of others when I call out of work or school because I have yet another migraine really deterred me from taking care of myself. I felt like the only people who believed were my parents and roommates.
In the first few days of living at college, I had to go home because I was in so much pain. When I came back to school, I explained to my roommates that I had a migraine, which happens frequently. My roommate responded, “Yeah, it was nerves.” I’ll never dispute the fact that stress causes an uptick in migraines, but migraines are a neurological disorder. Most chronic migraineurs manage their stress, what they eat, and all possible triggers and still have migraines. A genetic, neurological disease affects people of all stress levels.
I was taking Excedrin Migraine anytime I felt a headache coming, which was twice a day, every day. For as long as I can remember, I would wake up with a mild headache that turned into a painful migraine by 10am. When I told my headache doctor about this, he said: “I hope you aren’t having rebound headaches.” I knew about rebound headaches because my neurologist had me taper off Excedrin Migraine. However, I never understood what I could do to PREVENT rebound headaches. I researched rebound headaches so I could get out of rebound.
The Ament Headache Center talks about treating rebound headaches:
Often, treating rebound headache can be done in the outpatient setting. It may require several attempts, and a number of adjustments in the plan along the way – another reason to enlist the help of your physician. However, in some cases, the safest, most compassionate, and most successful way to eliminate rebound headaches requires hospitalization. Consult with your physician for the most appropriate option for you.
Since I had tapered Excedrin Migraine in the past and was given steroid taper, I decided the best way to get out of rebound was to go cold turkey with all analgesics. Tackling rebound headaches is not easy, and some people require hospitalization. I made through two days without Excedrin until the pain was so bad that I was in tears. I broke down and took an Imitrex, which helped my pain but also felt like a failure. I was able to get through next week without relying on medications. I used the WellPatch patches and the Aculief wearable religiously that week. After that, I vowed to do my best to prevent rebound headaches.
The most effective way to treat rebound headaches is to stop using analgesics all together. Most doctors say that tapering analgesics or a steroid taper just prolongs the process.
I currently keep rebound headaches at bay by keeping a log of all the analgesics I take. I write down how many times I take each pill in that month. I can’t recommend Migraine Buddy enough, this app helps to track what medicine I take and when. Migraine Buddy has also been invaluable at tracking my triggers, what’s is helpful, and where the pain is located. Because of Migraine Buddy, I am much better prepared to describe my migraines to the doctor.
From my research, I learned that analgesics should be used less than ten times each month. My neurologist advised that she recommends using analgesics no more than twice per week. I think everyone is different, and each body is unique, so you might be able to handle more or less of what is recommended.
I keep this little table in my notes so I can easily track each medication:
Banishing Rebound Headaches Medication Number of times used (less than 10) Triptan ex: Imitrex # Excedrin(Acetaminophen & Aspirin) # Naproxen ex: Aleve # Ibuprofen #
- Do Family & Friends Understand?
My hope for this page is to create a better understanding for the family/friends of us migraineurs. To be totally honest, for about a year, I was deep in rebound (also known as MOH) and grief. For the first time in my life, it was just my dad and me. My dad never had to know what I was dealing with medically because my mom was the one who took care of me when I was sick, knew when I was in so much pain and, made sure I went to my doctors’ appointments.
I could barely open my eyes for about six months. Everything was intensely painful. Understandably, my dad was frustrated with me quite often. Once I began to take steps to get my migraines under control, I felt the heaviness lift, and my dad saw that I was making progress. This was when I began my research into chronic migraine. I would send my dad facts about chronic migraine to help him understand.
This journey can be so lonely. While it’s probable that most of us have family members who have migraines, it is unlikely that we experience migraines in the same way. Both my parents and other family members have/had migraines, but my migraines are by far the most disabling. That’s why I love this chronic community.
I had to take steps to educate my dad about what I was dealing with. It takes work to understand invisible illnesses. We can look totally fine while our brains are in excruciating pain.
Now, my dad knows when I have migraines. He tries to be quiet if I’m not feeling well. He understands that I wish I could function like a “normal” person. My dad acknowledges and thanks me for what I can do. He asks me to rest after being productive. Am I the only one who is super productive on migraine-free days? If you have someone in your life who doesn’t think your pain is real or you’re exaggerating, kindly educate them. You are doing the best you can. Be proud of yourself.
- Anxiety & Doctor’s Visits
I can’t remember ever coming out of a doctor’s appointment feeling happy. Right now, I am so glad and relieved. I’ll try to keep the migraine/Excedrin caffeine induced rambling to a minimum. I am going to attempt to document my journey with chronic migraine for myself, and if it if one person benefits from my experience, then it is totally worth it.
Last week I went to the neurologist, and on my way out, she ordered bloodwork. I did the bloodwork the next day and anxiously awaited my results, prepare for weird results but expecting everything to be normal. The results were normal, except my platelets were high, and MCV and MCH were low. After going down the Google rabbit hole, the neurologists said I should follow up with my family doctor about the platelets. Obviously, I know that google results are often the worst-case scenario, but I still needed to logic my way out of panicking. The Google results showed that high platelets indicated cancer or a likelihood of developing cancer. Keep in my mind, this was the same week as the anniversary of my mom’s passing from cancer. The next day I had reasoned my out of panicking but was still googling possible causes. I don’t have any odd physical symptoms other than the usual chronic migraine stuff. For a few days, I was pretty sure I was anemic. I was comparing the redness of my lower eyelid to pictures of those with anemia. As I got ready for my appointment, I was nervous but not freaking out about something being horribly wrong.
I hate going to the doctor, and I have so much anxiety about it because of what I experienced with my mom. I made an appointment with a doctor who I knew had a lot of experience. I was prepared to wait an hour, I had audiobooks, snacks, water of course, and an actual book. I think I waited for maybe five minutes. The longest part of the visit was the medical assistant asking me about my medical history, current medications, flu shot, etc. Am I the only one who spends at least a half-hour answering all the questions?
Let me just say that part of the reason why I hate going to the family doctor is that they screen for anxiety (which my responses always trigger the second of questions), and the entire appointment ends up being a lecture on therapy and anxiety medications. This time I only answered yes to two questions (Do you feel anxious? & Do you get annoyed easily?). I am so proud of how far I’ve come in managing my anxiety. Thanks to @health_anxiety on Instagram. The doctor seemed impressed when I told her how I am managing my anxiety. Also, I told her about using Headspace to meditate, and she said that was great, and that’s the app they recommend to their patients.
It turns out my platelets were only slightly high. A possible reason for the abnormal number is that I have chronic sinusitis, so my sinuses are always inflamed. The doctor said just to be on the safe side, I should get my labs done again next month. My platelets will probably come back high again, but not worry. She’s also testing my iron levels to rule out anemia. She definitively said, “you’re not anemic, but we will check anyway.” Overall, she was happy and said that I look “right as rain which is a good thing.”
I was also concerned because my heart rate is always high when I get it checked. It’s usually 130 or 140, and the nurse always says, “wow, that is so fast. Let me recheck it.” The doctor checked my heart and lungs and said that my heart rate was lower than it was earlier. I told her that my resting heart rate on my Apple Watch is 83, and she exclaimed: “Oh, you’re fine.” Just a reminder that anxiety presents as physical symptoms too.
Honestly, my biggest worry about going to the doctor is that they’ll somehow scold me for the weight that I’ve gained since switching preventive migraine meds. Neither of the doctors I’ve seen recently have even mentioned it. I thought that they would think that I didn’t care about my weight or that my health wasn’t important to me. Truthfully, I do everything I can to be healthy, and I’ve realized that the number on the scale doesn’t correspond to how well you take care of yourself. Even though I get migraines almost daily, I have never been healthier.
That saying “Your anxiety is lying to you” is so accurate. The truth is that our anxiety isn’t logical. Acknowledging that the anxiety isn’t our reality is so important.
- Migraine Toolkit
It is so important for us migraineurs to compile a toolkit for relieving migraines. I like to use natural or non-medicine relief methods so I can prevent rebound headaches. Prepare a toolkit that you can grab when a migraine strikes. I also like to keep these products in my purse so I can treat migraines on the go. What’s in your toolkit?
- The Headache Hat
This is my go-to icepack that gets very cold and stays cold. Most headache hats are too tight and give me a headache, but this one wraps around your head and the placement can be adjusted with velcro.
- Wearable Acupressure for Headache Relief
- Forces of Nature Migraine Rollerball
- WellPatch Migraine and Headache (I like this better than BeKool)
- Ice Roller for face, eyes, and migraine
- This is the CBD cream I can’t live without. Great for neck and back pain.
- Excedrin Migraine (use with caution, could lead to rebound headaches)
- Going to a new Neurologist
I am a few days away from my upcoming neurologist appointment. I am pretty nervous and anxious, but I am hopeful and looking forward to adding to my “treatment pie” as Migraine Strong calls it. My goals are to:
- Exchange amitriptyline for a different drug that doesn’t cause weight gain
- Start Botox again
- Add Aimovig or another CRPG
I’m hoping that the doctor will order tests to rule out anything more serious. I am sure that everything is fine, but it eases my anxiety when I have proof.
This doctor doesn’t have great reviews, but I’ve learned to advocate for myself. I have learned so much from doing my research and other people’s experiences. I have seen three neurologists in the past 12 years. Most neurologists aren’t headache experts, so I’m going into this appointment with a wealth of information and viewing the doctor as someone who helps to facilitate rather than dictate my treatment plan.