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chronic migraines

chronic illness

Return To Me: Reclaiming My Life

Reclaiming My Life

I created a post in October stating my excited for my return to blogging. I was so ready to get some order and routine back in my life. I had a plan for reclaiming my life but somewhere along the way, things went wrong.

As you may know, I suffer with chronic migraines on top of everything else. I had a neurologist that I loved but he decided to move elsewhere. I ended up seeing a temp neurologist for my regular 3 month checkup while they searched for a full time replacement. Previously we were using optic nerve blocks and trigger point injections in attempts to prevent migraines and/or knock down the frequency. Since I was still having migraines rather frequently, the temp neuro thought that I would be a perfect candidate for Botox so he got the ball rolling.

It took almost 6 months to get the Botox approved with my insurance and to schedule with a new neurologist. My appointment was finally set for November which was consequently within two weeks after my post about making a return to blogging. When my new neurologist walked into the exam room, I about fell off the table for two reasons. Reason #1: My new neurologist is actually my old neurologist whose practice I quit years ago because I felt like he never listened. Reason #2: The amount of needles I saw on the tray he was carrying was terrifying. My round of Botox included 31 injections. THIRTY-ONE. I wanted to pass out.

I got through the first 20-25 shots relatively well but after that I began to feel very sick and weak. My neurologist said that it was not uncommon and that I was actually one tough cookie considering I was able to stay strong as long as I did. The process was far from a walk in the park. I think that migraines and injections are going to be a forms of torture in one of the circles of hell (check out Dante’s Inferno). After what felt like eternity, the appointment came to a close and I was on my way home.

Shortly after that all hell broke loose.

The pain was excruciating and never ending. I have never experienced such intense migraine pain in all my life and it also felt like the migraine extended down my spinal cord. That same throbbing and pressure extended all the way down. It hurt to move. It hurt to lay down. Everything that I have used in the past to ease my migraines was no longer effective. There was no escaping the pain. I couldn’t sleep and there were moments where keeping myself breathing took all the energy I had.

I don’t know what the Botox set off but it was definitely the source as a lot of the side effects I had never encountered until I got the Botox. The neurologist didn’t want to acknowledge it initially but after we tried altering my other preventative medications and having an infusion, he figured it out. He said that it was likely that the Botox was too much for the muscles in the back of my head and neck which then caused the spinal migraines. He ordered a MRI for next week and prescribed me an anti-anxiety medication to see if it would help relax those muscles to decrease the pain which in turn would help me sleep and feel like an actual functioning individual.

For the first time in a long time, I felt like I was finally able to be the wife and mother I had been longing for. I had hope and dreams for what was become. My creativity and inspiration had returned and I made lists of things I wanted to achieve both in blogging and in my personal life. I finally felt like I was reclaiming my life again. I was finally going to be able to return to being me. I was finally going to be able to look into the mirror and recognize the person staring back at me. It felt so good.

Then just minutes ago as I was writing this post, I got call from my neurologist and he wants to stop the medication. Even though I was able to make a long list of all the positive changes it has allowed me to make, he thought it wasn’t worth risking the side effects. When the nurse called to deliver the news I cried on the phone with her and asked that she talk to him again and plead my case. I have worked hard with my pain specialist to wean off 80% of my pain medications and have stopped two others that were not nearly as effective for my fibromyalgia pain as the new medication.

I had all intentions for this post to have a happy ever after ending with balloons and confetti. I felt like I was finally reclaiming my life and couldn’t wait to tell you everything I had planned. I still have a lot of plans that I will definitely be sharing with but first, in order to continue reclaiming my life, my first order of business is to pick up my toolbox and go to work as my own advocate before that reflection in the mirror starts to fade.

I refuse to give up.

 

AWESOME UPDATE: Later in the afternoon after I published this post, I was able to have a conversation with my doctor – a real, honest, raw conversation – and he is extending my prescription at least until we get my MRI results back (he doesn’t think there is a tumor but is concerned about possible fluid buildup causing pressure). Once we have the results, we will sit down together and go over everything in detail and come up with a plan together on how to proceed! A major victory for the spoonie team! This is proof of important it is to become your own advocate. Make sure your voice is heard. Whatever it takes. Don’t worry about being annoying or inpatient. The nurse kept trying to end the conversation but I knew I had to finish and say what I needed to say. I wanted to be sure that everything was out on the table and in this case, it worked. Advocacy for the win! Now that hope is restored and I’m feeling like a chronic badass, I can’t wait to share what is in store for the future tomorrow!

chronic illness

The Best Way To Explain Chronic Migraines

Today’s guest post is written by Dr. Mark Khorsandi who works with the Migraine Relief Center which has several offices across the nation that offer a variety of treatment options including surgery, injections, and alternative options. Be sure to check out his site for more information

Along with the pain and emotional side effects of chronic migraines, the last thing a person wants during an attack is to hear someone say, “I understand. I get headaches every now and then too.” Although this is said out of empathy and no harm is meant by it, you and all other migraine sufferers know that a migraine is not a typical headache.

Adding to the frustration, is the fact that migraines cannot be seen from the outside. Because of this, not only is the pain intensity and the accompanying symptoms difficult for others to understand, but it can also be quite challenging to convince them that you are even suffering from a migraine in the first place.

So how do you help others to understand? As with most education, it is best to start with the basics.

What Is A Migraine?

The first question a curious loved one may ask is, “How do you know it’s not just a headache?”

Although migraines do fall under the same category as headaches, their characteristics are much different. First of all, unlike most headaches which are normally felt on both sides of the head, migraines typically focus on one side only. They also cause severe, intense throbbing or pulsing pain which can last from hours to weeks.

To make the situation worse, migraines are usually accompanied by a wide range of unpleasant symptoms such as blurred vision, vomiting, nausea and sensitivity to lights, smells and sounds. They can also cause stress, irritability and depression.

What Causes Chronic Migraines?

Another question you may hear is, “Why do you get them so often?”

Chronic migraines are often associated with genetics, such as skeletal imbalance problems, issues within the jaw joint or environmental factors. Unfortunately, until the root cause is discovered and corrected the migraines will likely continue.

  • Genetic Factors: Any type of misalignment above the shoulders, including the skull, jaw or neck can cause unusual activity in the trigeminal and facial nerves. When these nerves are irritated, the surrounding muscles experience unusual and chronic contraction. This leads to abnormal blood flow in the brain and ultimately to migraines.
  • Environmental Factors: Although genetics are likely the main cause for most sufferers, migraines can also be triggered by several environmental factors. A few of the main culprits are stress, dehydration, poor sleep, diet, lights, smells and hormones, such as menstrual cycles and menopause.

helping-explain-chronic-migraines

Types of Migraines

Occasionally you may hear statements such as, “My friend has migraines too, but she never complains about nausea.” 

That very well could be true, but this is the perfect time to let them know that there are actually five different types of chronic migraines. Furthermore, each of those types comes with its own unique pain sensations and symptoms.

Basilar Migraine

This is one of the few migraines that can be felt on both sides of your head, as well as on the back. Along with the severe stabbing or throbbing pain, many sufferers also experience visual disturbances, confusion, balance loss and an inability to speak.

Ocular/Retinal Migraine

With this type of migraine, often the first symptom is partial or full loss of vision in one eye, which can last up to an hour and occur as early as 18 hours before the migraine strikes. The rhythmic throbbing or pulsing pain is usually accompanied with sensitivity to light.

Hemiplegic Migraine

Frightening stroke-like symptoms often precede the severe throbbing pain of a hemiplegic migraine. These symptoms can include loss of consciousness, nausea, confusion, dizziness, numbness and slurred speech.

Transformed Migraine

The transformed migraine, although typically less intense than the others, can occur daily. The steady ache, throbbing or tension sensation felt from this migraine is often accompanied by symptoms such as light and sound sensitivity and nausea.

Silent Migraine

Since this type of migraine strikes without pain, it can be more difficult than the others to self-diagnose. However, the symptoms are the same and can be just as debilitating. With a silent migraine, you will likely experience visual disturbances, sensitivity to sound and light, confusion and nausea.

 

Migraine Treatments

The final question is one that almost every migraine sufferer has probably heard. “Why won’t you just take an aspirin?”

Unlike normal headaches, migraines do not always respond to standard over the counter medications. Instead, many migraine sufferers must take prescription drugs to relieve their symptoms. Others look for relief in home remedies, massage, Botox and for the most severe cases, surgery.

Friends and loved ones ask questions out of both curiosity and concern, but finding the right way to answer them is sometimes difficult, especially during a migraine attack. Fortunately, now you will be more equipped to explain to others exactly what you are experiencing. Better yet, you can lay your head down, put an eye mask on and say, “Here. Read this.”

Stock photos by Turquoise & Palm

disclaimer

Information posted here should not be considered medical advice. It is not intended to replace consultation with physicians or other healthcare providers. A New Kind of Normal covers my personal experience and because every person's experience is unique, it should not be relied upon as a substitute for professional healthcare.

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