An Honest Reflection on Botox as a Treatment for Chronic Migraine

Journey to Botox

For over half my life I have lived with this disease. My first memory of having head pain was at 8 years old. It wasn’t until, 1998, when I was 18 years old that I was official diagnosed with migraine. Like so many stories that I have read, this disease was not taken seriously by medical profession. It was brushed off as “stress” and I was put on a regiment of antidepressants and anxiety medication.

I am now forty years old, and during my journey with this disease, I have tried just about everything to manage my attack. In 2014, at the age of thirty-four; my disease went from a diagnosis of “episodic” to “chronic”. The year 2014 marks the time when I was involved in a minor fender bender, which set off a series of cervical spine surgeries. I went from being a vivacious, enthusiastic, go-getter–with an extremely active lifestyle , working full time in a career that I was passionate about and finishing up my degree for my Doctoral program.

At the beginning of this “Chronic Migraine” journey, I was living in constant excruciating daily pain. I can only describe this pain as feeling like I had gasoline burning in my head, neck and upper back 24/7. The pain crippled me; causing me unable to leave bed for days on end. The “go, go, go” life that I had once had came to a screeching halt. I became deeply depressed. It was during this time that I was forced to take a break from my career and educational endeavors to focus on solely on my health.

If one word was used to describe this season of my life it would be DESPERATE! It was during this time that I was introduced to the notion of a multidisciplinarian approach to my disease including western and eastern medicine. The therapies that tried were biofeedback training, cognitive behavioral therapy, acupuncture, massage therapy, physical therapy, taking a regiment of Chinese herbs, vitamins, and meditation—and this was all done IN addition to being on the Russian roulette of the “standard” western medical protocol for this disease–this was comprised of the trial of MULTIPLE medications, nerve blocks, ultrasound guided nerve blocks and trigger point injections, occipital nerve blocks, medial branch blocks, and three cervical spine surgeries, including an occipital nerve decompression procedure. I was put through the wringer of western and eastern medical treatments for Chronic Migraine. My Neurologist, who by the way was an ABSOLUTE GEM; was left wringing his hands as to what else I could possible try to obtain a level of control of this disease. He and I discussed many different options including being put on the waiting list at the Mayo Clinic and a variety of a Headache Specialist across the Western half of the United States. My doctor wanted me DESPERATELY to try Botox but, unfortunately, my insurance at the time REFUSED to cover Botox. So, it appeared we were at an in pass–I had basically decided that this was going to be the rest of my life.

Here we are at present time–I have endured countless rounds of fertility treatments that ultimately led to IVF (In Vitro Fertilization) which, blessed me with a beautiful son. Additionally, I was doubly blessed with; a Headache Specialist who was willing to try ANYTHING to help to get my attacks manageable. During the past 3 years, I have tried a 10 day hospital in-patient program for Chronic Migraine; been on several new medication protocols and have tried a variety of treatment options. BUT the BIGGEST blessing of them all–my new insurance COVERS Botox.

So here I am, eleven rounds of Botox under my belt and there have been many things I have learned over the past two years. So here is my list of things that I WISHED I had known

Things That I Wished I had Known About Botox for Migraine

  • Get Out Your Boxing Gloves: Be prepared for a fight with your insurance company– Just because your Doctor signs off on Botox DOES NOT mean its a done deal. I spent countless hours on the phone with insurance. Including several DENIAL letters, of which, I was forced to provide documentation (medical records), a personal statement and other documentation submitted to the insurance company. I wish I could say this was an isolated experience–but this is something that I have had to fight EVERY TIME I am scheduled for Botox. Sometimes, this process will take WEEKS or even MONTHS, which inevitably delays Botox.
  • Botox Does Not Have the Same Efficacy Every Time.- I learned this the hard way. After receiving a full 4 rounds of Botox (all of which helped to some degree), I received a round of Botox that WAS NOT as effective. At week 6, my doctor (who had been administering nerve blocks to help with the pain), requested blood work, which included a Botox antibody test–to ensure that I was not becoming immune to that particular Botox strand. (which can back negative by the way). It took approximately 8 weeks before I begin to notice any changes in the intensity of attacks. BUT, overall, this round of Botox DID not work as well. Being of an inquisitive nature, I asked my doctor WHY it had not been as effective as previous treatments. His conclusion was that perhaps the medication when shipped in a COLD environment could have been exposed to some warmer temperature, which could have disrupted the molecular composition of the medication. Apparently Botox, is incredibly sensitive to temperature changes. Somy recommendation is if you have noticed that your medication was not kept quite as cold as you think is appropriate; to contact your pharmacy and see if they are willing to reship the product (JUST A SUGGESTION)!
  • Botox DOES NOT Mean That You Will Become Attack Free– Please remember I am speaking from a “Chronic Migraine” perspective. Yes the infomercials depict individuals frocling through a field of flowers after receiving a treatment. But, for me, THIS IS NOT THE CASE. Yes, I have noticed decreased neck pain, intensity of attacks and shortened attack time–BUT receiving Botox DOES not mean you will be pain free! (AGAIN, this is JUST my PERSPECTIVE–EVERYONE is different in their response to Botox).
  • .It Takes TIME Buckle up because it will take time for the medication to kick in. For me it can take upwards of 3 weeks after the administration of Botox for evidence of a decrease in attack frequency, duration and intensity. Often times this GRADUALLY takes effect. My best indicator that its taking effect: my eyebrows can’t move like they used to! 🙂
  • It (CANNOT) Last as Long as You Would Think- Let me start with this disclaimer: EVERYONE IS DIFFERENT! But my experience with Botox, is when it works, it works WELL. But when it begins to wear off–buckle up its “Attack City”. The other thing is they, and when I say “they” I’m referring to the insurance company, has some sort of algorithm which came up with TWELVE weeks as the magic number for the AVERAGE person to receive their next treatment of Botox. My experience is that my Botox begins to wear off around week ten. Which means I have two weeks of intense attacks —-followed by 2-3 weeks waiting for the medication to began working. So, all together I am looking at approximately 5 weeks of absolute hell. During this time, I hold fast to the hope that it will start working any time; give myself LOTS of grace, rest and self-care. AGAIN, this is MY experience. I will say that I have spoke with other individual with Chronic Migraine and this is their experience as well. Talk with your doctor!
  • There is a CHANCE it may NOT Work Your 1st Time–To be honest, this was something that I was 100% unprepared for. NO ONE explained to me that on the AVERAGE, the first or even second time of administration results in little or no difference in attacks. When the medication is presented it is shown the “GOLDEN TICKET” to your treatment plan—it was presented as THE thing that would CHANGE my life. But, I am going to be absolutely authentic with you…..YES it has changed my life—but it took TIME—its been over TWO years since I received my first round of Botox and within the past 6 months is the first time I have seen SIGNIFICANT changes in the frequency, duration and intensity. But you have to remember I started with the daily “gasoline in my head” level pain. So this MAY NOT be the result that YOU experience. I wouldn’t say you need to prepare for the WORST possible scenario, I recommend that you go with an open mind and the expectation that this COULD take some time to elicit results. Remember Rome was NOT built in ONE day—Good things take TIME!
  • MOST Insurances WILL NOT Cover Botox any sooner than Twelve Weeks Between Each Session– If you find yourself in the similar place that am; that your botox wears off WAY before twelve weeks. You will find that the majority of insurance companies DO NOT want to pay for you to have Botox and sooner than the magical twelve week number. AGAIN this may work out FANTASTIC for you—but if you are in my situation you need to be prepared to have to wait for the twelve weeks between administering. ONE solution my doctor and I have come up with is to do nerve blocks ever few weeks, especially during the “waiting period”. This seems to help get through the “hump” until the medication begins to set in. TALK WITH YOUR DOCTOR for a PLAN that fits YOUR situation!
  • Botox Savings Program--If you do not have insurance that covers Botox–you are IN LUCK–there is a Botox Savings Program which you an enroll in! It is comprised of some basic questions accompanied with some documentation. I did not learn about this program until this year, and feel like it IS NOT widely publicized. Even if you do have insurance and have to pay a RIDICULOUS copay (like me)–this program can help! Take and look!

Final Thoughts and DISCLAIMER

I would like to reiterate that I AM NOT A MEDICAL DOCTOR. This is simply an overview of the issues that I have encountered with Botox. All in all–BOTOX has changed my life. Even for the short window of time that I have lowered pain days when it is working at 100%–I no longer have the “gasoline in the head” type pain and the duration and intensity of attacks has decreased exponentially. Yes I am still classified as someone who lives with “Chronic Migraine”. But now I have found a protocol that WORKS for me. I ENCOURAGE you to discuss with your doctor what treatment plan is best for you. This list was merely a reflection of MY experience living with Chronic Migraine and the treatment options I have tried. AGAIN SPEAK WITH YOU DOCTOR.

Mitochondrial Dysfunction and it’s Potential Relationship to Migraine

I have been a suffer of migraine since I was a child and having turned chronic six years ago, I have spent countless hours researching potential factors that could be playing into this neurologic disorder.  Several years ago, I learned from my neurologists/headache specialist that migraine is actually a genetic disorder. Which means it is written on your DNA.  That doesn’t mean that all individuals with “migraine” written on their DNA are plagued with chronic migraine—it simply means that having it written on our DNA makes us PREDISPOSITIONED to be more susceptible for this condition.  There is more in depth information about genetics and migraine found at the American Migraine Foundation’s website.

But having learned this information, it made me really think—what other issues inside my body could be a factor in chronic migraine.  I am lucky and have an amazing headache specialists who is constantly trying to think outside the box.  He is a true gem, one that is not typically found in the sea of doctors that treat this disease.  I was recently chatting with my doctor and he suggested that mitochondrial dysfunction could be a potential factor in migraine.  I found this fascinating and thus have taken a much deeper dive into the scientific research that has been conducted on this topic.  The function of this piece is to introduce the basic ideas and to share resources with the migraine community—so that you too can be introduced to this research. 

So, buckle up to “NERD OUT” on cellular energy production! Disclaimer—I am by all means NOT a medical doctor NOR am I a scientific researcher.  I am simply a chronic migraine patient who is searching for non-pharmacological ways to improve my quality of life! 

Some research to ponder—according to study that was conducted in 2013 entitled Mitochondrial Dysfunction in Migraine, “In the 1980s, scientists first hypothesized a connection between migraine and mitochondrial (mt) disorders. More recent studies have suggested that at least some subtypes of migraine may be related to a mt defect” (Yorns & Hardison).  Moreover, there has been further research which indicates that:

“migraine is caused by mitochondrial dysfunction: impaired production of ATP from mitochondria. The best treatments for migraine are the treatments that improve mitochondrial function. In migraine, the failure of mitochondrial performance is endogenous: coming from within. Very importantly, inflammation can cause mitochondrial impairment, and mitochondrial impairment can cause inflammation.  However, the combination of inflammation with mitochondrial impairment is particularly devastating for the nervous system, strongly promoting pain, “sensitization”, migraine and seizure as well as neurodegeneration. Doctors are now realizing: To effectively treat these chronic pain conditions, we have to improve the patients’ nutritional status, and we have to specifically improve mitochondrial performance” (Vasquez, 2016).

So, I am sure you are sitting there asking yourself—OK SO how can I increase the function of a “potential” mitochondrial dysfunction??  

My doctor explained it to me in using non scientific terms (THANK GOODNESS—I told you he was a GOOD one!); and basically, there is a WAY to increase cellular function through increasing the functionality of the Pyruvate in your cells. Pyruvate is essentially one of the key pieces to help a cell function properly.  So, how do you “help” the Pyruvate in your cells to function more effectively?  Well, my doctor sent me to a website that allows you to purchase a direct derivate of Pyruvate called Pyrucet.  This derivative of Pyruvate is applied to my forearms once a day—I take 20 drops.  Since starting this I have noticed a significant increase in my energy, and feel as if the medications that I am on to help manage my migraine attacks are working more effectively.  I am in NO way endorsing that you run out and purchase this product, but rather want to share with the community another option to research and to discuss with your doctor.

Below are some links to some scientific articles, websites and other resources that I felt would help to enhance this information.  Take a look! This could be yet another way to fight the battle with chronic migraine!

DISCLAIMER—Discuss ALL medical treatments with YOUR doctor. I am NOT a Physician. This document was proofread and fact checked by my Headache Specialist prior to publishing.

Living with Hemiplegic Migraine

The first time I had a hemiplegic migraine attack, I was 39 years old. I thought I was having a panic attack or a stroke when the attack first hit me early on a weekday morning. My right leg and arm went completely numb, I was carrying my son at the time so I sat him down in a safe area and laid down on the floor of our kitchen completely paralyzed on my right side. My son stood at the baby gate watching me lay on the floor as I tried to tell him, “Momma is ok” and call for my husband at the same time. You could see the shear fear in my baby boy’s eyes. Thankfully, my husband was running late for work that day and was still home. He scooped me up off the floor and on to the couch and made sure I was ok. After about 30 mins– the attack passed, and the weakness on the right side of my body stopped. Again, I thought this was a panic attack so didn’t really think much more about it until I started doing a little deep Google diving and found that there is in fact a type of migraine that mimics a stroke; it is called a hemiplegic migraine.

What is Hemiplegic Migraine

The American Migraine Foundation defines a hemiplegic migraine as, ” a rare form of migraine where people experience weakness on one side of their body (hemiplegia) in addition to the migraine headache attack. The weakness is a form of migraine aura and occurs with other forms of typical migraine aura like changes in vision, speech or sensation”.

The symptoms of hemiplegic migraine are as follows:

  • Motor weakness on one side of the body (Hemiplegia)
  • Headache
  • Other typical aura symptoms – vision changes (sparkles, shimmers, visual field defects), numbness, tingling, trouble speaking
  • Fever
  • Impaired consciousness ranging from confusion to profound coma
  • Ataxia (defective muscle coordination)
  • Nausea and/or vomiting
  • Phonophobia (increased sensitivity to sound) and/or photophobia (increased sensitivity to light)

The symptoms can last for hours to days, or rarely weeks, but most resolve completely.

In MOST cases of hemiplegic migraine, it presents when the patient is a child. I am a rare case in that it presented much later in life. Although when I think back on all the years I have lived with this neurological disease, I can remember points where I had weakness and “stroke like” feelings on side of my body–so it is possible I had it as a child but didn’t recognize the symptoms as being alarming until I have become much more educated on this debilitating neurologic disease.

Hemplegic migraine, like general migraine disorder; are linked to genetics. According to the AMF, “hemiplegic migraine is divided into Familial hemiplegic migraine (runs in the family) or Sporadic hemiplegic migraine (happens only in one individual). This is a very rare migraine type so if you ever experience new or never-evaluated weakness with your headache, you should seek immediate medical evaluation and not assume you have hemiplegic migraine. Both familial and sporadic hemiplegic migraines often begin in childhood. Diagnosing hemiplegic migraine can be difficult, as the symptoms can mimic stroke, seizures or other conditions. A full neurological work up, including obtaining imaging of the brain and vessels in the head, and careful review of medical history and symptoms are necessary to rule out other causes and confirm a diagnosis of hemiplegic migraine. Family medical history is especially helpful in diagnosing familial hemiplegic migraine”.

Living with Hemiplegic and Chronic Migraine

I am now 40 years old and have chronic migraine in addition to hemiplegic. I have lived with migraine attacks since I was 10 years old; but was not formally diagnosed until I was 18 years old. For, many years my migraine attacks presented with a visual aura in one eye, and head pain would follow within 1-3 hours. I was able to take a triptan such as, Imitrex, go to sleep and the attack would end. Approximately six years ago, I was in a minor car accident/fender bender, which turned my attacks from “occasional” to “chronic”. In the past six years, I have had three spinal surgeries to correct herniated discs in my spine (which they believe happened in the car accident). After the birth of my son in 2017, my attacks that were already chronic spiraled into making me bedridden. I was unable to care for my son the first year of his life. In 2019, I was admitted to an intensive migraine treatment program in Michigan, which led to the diagnosis of a Spinal Fluid Leak—I had a blood patch epidural to correct the leak in my spinal fluid. In the time since attending the program in Michigan, I have been slowly finding my path to what my life looks like living with Chronic Migraine. To say I was utterly SHOCKED with a new diagnosis of Hemiplegic Migraine is an understatement! My doctor ordered several tests and blood work to finally conclude that I was in fact having hemiplegic migraine attacks.

What I have found with my hemiplegic attacks are that they typically proceed an INTENSE head pain attack, nausea, dizziness and extreme light and sound sensitivity. The longest attack I have had was almost a week in entirety. The hemiplegic attacks typically occur when I am in a “Botox Letdown“, or an extremely stressful situation.

As far as treatment, my doctor has put me on a calcium channel blocker (Amlodipine–Norvasc). This treatment coupled with Botox every 12 weeks, daily maintenance medications and monthly Ajovy has seemed to help. But honestly, now that I am AWARE of what is happening to me; I have found that I just need to get to a safe place and ride the attack out. It has been INCREDIBLY scary having an attack while caring for my son, who is 2.5 years old. On the days when I do not have help at home from my husband—I will try to plan very low energy activities with my son like coloring, playdoh or painting. On the occasion it has gotten so severe that I am unable to use my arm or leg from the temporary paralysis, I have called a baby sitter or my husband has come home from work. The head pain attack that follows usually presents within 1-3 hours, and can last up to 4 days. During that time, I still experience weakness in my arm/leg accompanied with tingling and numbness, nausea, dizziness and noise/light sensitivity.

If you believe you have had/or are having hemiplegic attacks, I would encourage you to speak to your neurologists or headache specialists. They can perform the proper tests for a diagnosis. Having this diagnosis, in addition to having chronic migraine is challenging. But, for me, it has motivated me to be more vocal, educate and advocate for all forms of this neurological disease. There is such a huge misconception in our society surrounding migraine. As an advocate, I hope to educate the general public, and if I can help ONE individual then I am happy.

Gua Sha as a Tool for Muscle Tension and Relief

As a chronic migraine sufferer, finding another tool to add to your toolbox is always valuable. I discovered Gua Sha while receiving weekly accupuncture to try to settle my nervous system and get my migraine attacks under control. One thing that was noted was that my neck and back muscles were incredibly tight–I’m fairly sure my acupuncturists used the word “concrete” to describe my upper back and neck muscles. She suggested we give Gua Sha a try to help loosen the muscles. Once I did it a few times I was HOOKED. I had noticeable differences in my overall muscle tightness and discomfort which was perpetuating the migraine attack cycle.

What is Gua Sha?!!

So what is Gua Sha?! Well its a therapeutic, healing technique that has its roots in East Asian medicine. According to Dr. Sheel Desai Solomon, a board-certified Raleigh-Durham North Carolina dermatologist; “Gua” means scrape, and ‘Sha’ means sand,” in an article from Good Housekeeping , “Dr Solomon was noted saying that “it is a treatment that involves scraping a flat jade or rose quartz stone over the skin in upward strokes to relax stiff muscles and promote tissue drainage”. Furthermore, it has been noted to treat muscle aches, pain and tension.

My Experience

When doing proper technique of Gua Sha–the tool is rubbed agains the skin in long strokes applying enough pressure that may (or will) cause minor bruising. This article here; from Medical News Today, provides a great comprehensive overview at Gua Sha as a treatment tool including any medical concerns with using this as a form of treatment.

In my experience , I have been utilizing my Gua Sha tool on my face as a little gentle massage after I do my morning and nighttime skin routine, but I primarily use it on my shoulders, temples and neck muscles during an attack to help relax the muscles and promote blood flow in those areas.

What to Expect:

The first time I had the technique done, my skin was bruised for several days–it was not painful while being done but my skin was a bit sore to the touch for a few days following. Your skin should become a little pink/red while performing the technique, and it may turn into some bruising if any capilaries are broken. For me this technique has significantly helped my neck/upper back and shoulder muscle tension, and has been a great tool for me to keep the tightness under control.

On a typical day, I will do 2 treatments of my neck and shoulder area–usually once in the morning and again in the evening. If I am in an active attack, I may do upwards of 4 sessions to help keep my muscles loose—BONUS it feels like a nice gentle massage on those sore, painful areas that become activated during attacks.

What you need to perform Gua Sha:

  1. Gua Sha tool or even a simple spoon will work!
  2. Lotion or a gentle/non scented oil (I use coconut oil) to help move the tool across your skin.

Some of my favorite “How to” Videos for Reference:

  1. Gua Sha on Back and Shoulders
  2. How to do Gua Sha to Yourself
  3. Breaking up muscle knots with Gua Sha
  4. Gua Sha on Neck (MY FAVORITE)!
  5. More Gua Sha on Neck

**Please check with YOUR doctor before trying any new treatments—this is only my experience and opinion of using this form of treatment in my migraine attacks.

The Barometric Pressure Migraine: Tips on How to Weather the Storm.

When I was a child, I can remember my grandmother saying that she knew when a storm was coming because her arthritis would always start hurting. Fast-forward 30 years, and here I am a 40 year old woman who can tell if a change in the weather is going to occur within 300 miles of wherever I am located.

I haven’t always been effected by barometric pressure changes. Growing up in the Southeast United States it’s common to have VERY crazy weather patterns. It hasn’t been until my husband and I moved from Oregon to North Carolina that I noticed a MAJOR difference in my migraine attacks in correlation to drastic increases or decreases in the barometric pressure.

Barometric pressure can be simply defined as the air pressure within the atmosphere. A sharp change in this pressure can excacerbate some conditions; with headache or migraine being one of them. According to a NY Times Article, which interviewed Dr. Matthew Fink of New York-Presbyterian Hospital/Weill Cornell Medical Center:

"Differences in air pressure because of the weather or changes in altitude can have noticeable effects on the human body, though some people are more sensitive than others. Low barometric pressure can cause headaches by creating a pressure difference between the surrounding atmosphere and the sinuses, which are filled with air"

In a study that was published by the Journal of Internal Medicine, it was found that barometric pressure change can be one of the exacerbating factors of migraine headaches.

So maybe my grandmother wasn’t crazy when she could feel the weather coming! I know for certain that where I live currently has made a significant impact on my migraine frequency and duration. Which is frustrating when in fact it is an “act of God” which is causing your attacks to continue to happen.

Over the past 2.5 years, I have been trying to figure out ways to manage my migraine attacks according to the weather patterns. Here are a few tips that I have come up with—if you too are plagued with “weather migraine” attacks.

  1. Download a barometric pressure app on your phone. My favorite app is also a migraine tracking app as well- Migraine Buddy. It will let you know when there is going to be a significant change in barometric pressure in your area over a 48-hour period. This has been a life saver for me–so that I can plan my “bad days” around my schedule.
  2. Try barometric pressure earplugs. I ordered a pair of WeatherX ear plugs off of amazon to try to see if it would alleviate some of my pain during a weather change. Unfortunately, I have seen little impact on my migraine attack intensity or duration while using the earplugs. But, I also believe I am HIGHLY sensitive to pressure changes–so it might be worth a try.
  3. Try to stay as hydrated as possible—this is important as a chronic migraineur anyways–but I have found it is especially important during weather changes. Making sure that I am constantly keeping myself hydrated (even when I am in pain and DO NOT want to drink water) can help while the storm blows through.
  4. TAKE YOUR ABORTIVE MEDS as soon as you feel the attack beginning! Historically, I am not great about taking my medications soon enough to stop the pain train from leaving the station. What I have learned by having to manage extreme highs and lows of pressure changes in NC is that AS soon as I feel a twinge of an attack–its best to take my medication. The result if not taken in enough time is catastrophic– causing EXTREME pain and usually takes HOURS for my pain to settle down.
  5. If you are a mom like I am, and can see (or feel) a BIG pressure change coming—ask for help. So often, I have “pushed through” which only causes the attack to last even longer. Call a neighbor, babysitter, friend or family member to come give a helping hand during the worst of the attack so you can rest. The thing with weather triggered attacks is they typically (in my case) are fast, furious and intense. By taking the time to look out for me, and allowing myself to rest (when I can)–I typically shake an attack faster. I understand that this is not always possible–but if you can do not be afraid to waive your white flag of defeat and call in help!

As for long term management of such a strong sensitivity to weather patterns, I do not have any answers for that. From the research that I have done there are some areas of the United States that have less volatile pressure changes. At this point my husband and I are exploring all options when it comes to my migraine management, which may include a move. This is not an ideal situation, but with the quality of my life so depleted its worth the risk for me. The hope is that one day my migraine attacks will go from being “chronic” back to being “episodic”—so if we have to make a move to make that happen I am willing to give it a try!

Tools for Your Toolbox: Emotional Freedom Tapping for Pain/Anxiety Management

Emotional Freedom Tapping (EFT) was something WAY outside my comfort zone the first time I tried it. But, at the recommendation of my acupuncturists and pain management doctor I thought I would give it a whirl—and BOY am I glad I did.

EFT is based on meridian points, or energy hot areas, in your body to restore your body’s energy. Its similar to acupuncture. According to an article from, “its believed that restoring energy balance can relieve symptoms, a negative experience, or emotion”.

The idea of meridian points is based on Chinese medicine (again similar to acupuncture). Meridian points are thought of as places of energy in the body–these pathways (meridian points) can help to balance energy flow and maintain overall health.

Acupuncturists use needles to release energy from these meridian points, the idea behind EFT is that you can do this at home with your fingertips by applying pressure.

Here is a great video that explains how to do EFT .

There have been times that I have done several rounds of EFT during a especially high pain or anxiety ridden day and feel like I have taken a Xanax in minutes—it really works phenomenally! And its something you can add to your toolbox during times of high anxiety, or pain.

I know it may seem FAR OUT or “Weird”, but give it a try—you will be surprised at how you feel after a round of tapping!

Here are some other GREAT articles that talk about EFT in more detail:

Finding Love Again: Marriage During a Chronic Disease.

When my husband and I got married in 2005, we were all bright eyed and bushy tailed. We had a very traditional wedding- with traditional vows; “in sickness and in health, for richer or poorer, etc”. But, never in a million year did we ever believe that these vows would be put to the ultimate test 8 years into our marriage.

My husband and I were best friends before we ever became anything more. We told each other EVERYTHING. He was exactly what I looking for in a spouse; but, we both were in committed relationships when we met in graduate school. So we settled for best friends, study and drinking buddies. It was about a year into our friendship (and my last boyfriend was LONG GONE), that I finally got up enough courage to tell him how I felt. To my surprise, he felt the same way ; and from that point forward we were inseparable. We only dated 3 months before becoming engaged and less than a year after that we were married. We KNEW that we were destined to be together—living all of lives adventures by each others sides. He is my soul mate- my person who I would do anything for.

We spent the first half of our marriage living the dream- being young, finally having some money and being able to do things. We had no strings tying us down. We traveled, and even decided on a whim to pick up and leave the South for the West coast–for a truly amazing adventure.

It was a year and half after we moved to Oregon that I became sick. Being that our entire family lived in the Southeast- we clung to each other for support, like we were a life raft at sea. This experience made us ultimately stronger as a couple. But as time went on and the illness lingered it began to grind us down- it became harder and harder to cling to each other.

As I got sicker, and prospect of neurosurgery was on the horizon–we were filled with so much hope–This surgery would fix me and I would be, well again….I could be ME again. But that surgery came and went and all the recovery that came along with it. And yet, I still wasn’t well. The fractures in our strong foundation begin to surface around the time of my second spinal surgery. We were CERTAIN that this surgery would “fix” me–and poof my chronic migraines would go away.

It was at this point in our marriage and life that I distinctly remember thinking so this is what our vows meant “in sickness and in health”–not just when you get a cold or are running a fever–but the kind of sickness that takes your soul and drastically changes the person you once were…the person that your husband had married. Our wedding vows were being stretched to the ultimate limit during these 4 years of utter hell. I remember us having a conversation one day about how, “we had never imagined that the “in sickness and in health” portion of our vows would occur at such a young age”, that we had both assumed that portion of our marriage would take place much later in life; when we were closer to death.

Between the constant chronic migraine, pain from spinal surgeries and the desire to have children–we pressed forward with our lives to endure another deeply emotional process of IVF. By this point, we had been “trying” for almost 8 years with no pregnancy. We knew we needed an intervention–and we found one with an amazing fertility clinic. Just when we felt like NOTHING in our lives was going right–we had our first round of IVF (just 6 months after my last spinal surgery); and became pregnant with a baby boy. A MIRACLE by all sense of the word. We believed that our “bad luck” was maybe over and we could return to our “life plans” of raising a family and doing all the things we love with our son.

But, God had other plans for us—my husband was offered a job that we couldn’t turn down while I was 5.5 months pregnant. So in the midst of packing our home, leaving our dear friends and defending a dissertation to complete my Ph.D–we moved back south. Truly believing that THIS would be our next chapter. The new beginning that we had hoped and dreamed of for so long. A chance to get back to “us” again. Something we both so desperately craved.

But, to our surprise; the final surgery did not “cure” me of my attacks–if anything the attacks became worse and more intense after the birth of our son. The attacks intensified so much so that it is difficult for me to put into words the amount of daily pain I was living in. It wasn’t just the physical pain that was wrecking havoc on me, but the mental and emotional pain. Here I was a new mom, in a new town, with no support system and essentially unable to care for my “miracle” baby basic needs. I lived my life in a dark room. Family from all over the South had to swoop in and help us–we were a quickly sinking ship. My dear sweet husband, was doing all he could to help–but being the only income for our family–was constantly busy with work and helping out at home when he could. Our relationship at this point was nothing more than two ships passing in the night. I could barely care for myself–let alone a newborn and save enough “spoons” for my husband. I quickly slipped into a DEEP depression–why would a God who loves us so much give us a baby that I could not care for, and place us in a situation such as this..

All of this changed, when I presented with an opportunity to attend an inpatient hospital program for chronic migraine.Its been one year since I got to push the reset button on my life. I was fortunate enough to have a headache specialist who deeply cared for me and my well being and sent me to an inpatient hospital program to try to come up with some sort of management plan for me–so that I could have some sort of a life. When I entered the program in late December 2018–I was a shell of a person I once had been, I was depressed, under weight and living at daily pain levels of 5/5. I was an utter mess.

Thankfully, the inpatient program was able to help to put my train back on the tracks and provide me with lots of tools for my tool belt to manage and triage attacks. The reality of this all is that this is likely my forever. It has taken me some time to come to terms with that idea–and how can I still be ME and live inside the confides of this disease.

The transition has not been smooth for my husband and I . I am going to be honest, our marriage has basically seen more in the last 6 years, than many see in a lifetime. But how do we recover from this? How do we learn to love the new versions of ourselves. Neither one of us are the person that entered in this union 15 years ago. The words that keep coming to me are: Where do we go from here? How can we learn to love each other as the people we are now and still live out the dreams we set forth 15 years ago.

I was listenting to a podcast earlier today with Katherine and Jay Wolf—if you have not heard of them–immediately stop what you are doing and google them—they are a truly amazing example of a complicated, but ever so sweet marriage. Brief synopsis of their live–College sweethearts, and Katherine suffered a massive brain stem stroke at age 26. They had only been married a few years when this occurred, and had a 6 month old little baby. Again, their story is amazing —GO READ IT- Their first book Hope Heals- really opened my eyes to what living life completely different than you ever imagined could look like and how wonderful it could be DESPITE having a chronic condition.

What Jay Wolf said in this podcast resonated with me—he said that essentially after Katherine was home–they had to look at each other and make the decision of how to love a person that they barely knew–after such a horrific trauma Katherine nor Jay would never be the same people they were before. Chronicness has a way of doing this to people.

This is the point we are at right now in our relationship—divorce is off the table—we’ve already decided that —but how can we look at each other and make the decision to love the person standing in front of us despite all the years of hurt and trauma. We are in a place where we really do not know much about each other anymore–which breaks my heart–WE as a couple have lost sight of our vows and WHY they are important to us. I love my husband with all my heart–and as time goes by and I get stronger and able to do more things, I know things will get better between us; but some days right now —its JUST HARD. Its not just hard–its DAMN HARD.

Living behind the veil of a chronic disease does more than destroy your body, dreams, careers, relationships; but it can also, IF YOU LET IT, destroy your marriage. I am a fighter and I am not going to let this marriage slip away without a fight. I fought hard for my health, my surgeries, my son, and now my healing—there is no way in HELL I am going to let this ugly disease take my love. I recognized the road we face is long and painful–probably having to relive some of the hurtful things we have said to one another, or felt towards one another–which are ALL NORMAL reactions to a situation such as this.

I share with you my story because I believe that there are others who are managing similar situations. That they too are unsure where to go to next, and by bringing light to this situation–we can begin the healing process associated with it. THIS is the REAL, RAW, UNFILTERED LIFE with chronic illness. Its messy and beautiful all at once. I honestly believe that there is not enough written on this aspect of chronic illness. Yes, the patient is the one in the pain–but so is the caretaker/husband/partner. They deserve just as much support as the person who is enduring the illness. Because not only are they caring for someone that feels awful; they are often holding down a job and trying to care for additional responsibilities.

I hope what you take from this blog post is sincere appreciation for all the caregivers in your life–and for all the HARD work that both the patient AND the caregiver have to put in to continue to make the relationship keep going. Its not like this for all people, but I am certain that many can identify with these feelings.

Adios 2019 and Hello 2020…

As this decade comes to a close, I have found myself spending a great deal of time reflecting on what the last ten years has meant to me. These last ten years of my life have been the hardest, most rewarding and painful (physically and mentally), that I have ever experienced in my adult life. This decade has been quite honestly, the decade of pain–for it was during this last ten years that I had three spinal surgeries, developed chronic migraines, endured countless infertility and medical treatments, completed my Ph.D, and gave birth to my son.

I am really not one to jump on the “new year’s resolution ” train; but this upcoming year has me pausing and really looking inward to what I wish to achieve over the next year. As someone who suffers from a chronic illness, It can be a bit daunting to try to set “BIG” goals for a year–because sometimes you just can’t meet them. The first half of my life I was a go getter, self motivated, strong willed, type A personality who could accomplish ALOT in a year’s time. But now, with this chronic neurological disease that I battle every day, its hard to really set the bar VERY high for expectations for this upcoming year.

If I have learned anything in the last decade, its that NOTHING in this life can be taken for granted–if you do not have your health–you have nothing. So as we ease into this new decade–I too will be easing into my “New Year’s Resolutions” which include things such as more time with family, more pacing and management of my attacks and setting an intentional mindset to focus on the joy and happy things in my life. Because, this illness is not going anyway anytime soon, and, I have to learn to better manage it so that I can one day set lofty goals for myself.

But for now, I will spend my days settling into my routine of writing, meditating, practicing yoga and spending LOTS of time with my son. Being a stay at home mom was never something I sought out–in fact, I always imagined myself as much more of a career driven person–but God had other plans for me–and over this next year’s time, I plan to seek out his purpose for my new found life, hold tight to the good/low pain days, and soak up all the precious time with my son.

May you all have a restful and wonderful 2020! Happy New Year!

HAPPY 1st BIRTHDAY to The Mindful Migraineur!!

It’s been one year–Jan 25, 2019 was the day that I wrote my first blog, exposing my raw emotions of being a mom while managing a chronic illness to the world. When I started the_mindful_migraineur blog and Instagram account, I wanted nothing more than to help others. I felt a real tug at my heart to share my story–and by sharing my story, hopefully help others who are traveling down a similar life path.

On, January 5, 2019–I was discharged from my inpatient stay in Michigan at MHNI. When I entered the program December 26, 2018– I was a shell of the person I once was. Overcome with depression from incredible, constant migraine pain; I had slowly slipped down a very dark hill after the birth of my son in December 2017. This inpatient program was my “Hail Mary pass” that would hopefully provide me with more tools to manage this disease. But, the program did SO much more than give me new tools. It gave me a new outlook on life—and a new purpose—to help others.

I never anticipated to become such an advocate for this disease or meet the incredible people that I have through this last year. I sincerely started this blog and thought I would maybe get one person to look at it. But, if I could help one person that would be enough for me. This experience has become so much more… I have made friendships that will last a lifetime and the positive influence the chronic community has had on my life–has shaped me into the the person I am today.

So what’s next for me, and my blog—you will have to wait and see! I have a few things planned for this next year, including serving as an ambassador for Lyfebulb, where I get to flex my advocate muscle! Serving as an advocate for others, and giving back to this community that has given me so much is also one area that I plan to really focus on in 2020.

I am also opening a small business with fellow chronic migraineur and mom, Pamela from Beauty and The Migraine Beast —our little shop was a dream that was planted in our hearts from the moment we became friends a year ago thru Instagram. Our little shop, Hope and Hugs, should be open VERY soon–please give us a follow on Instagram @hopeandhugsshop for up to date information. We are SO excited to give back to the community that has given us SO much.

I want to extend a HUGE virtual HUG and THANK YOU to every single one of you who has supported me, cheered me on, and welcomed me into this chronic family. I genuinely hope that you have enjoyed a peek into my authentic, raw and unfiltered lens into my life living as a mom, wife, friend, and advocate for chronic migraine. I wholeheartedly hope that my journey has had a positive impact on YOUR journey.

Botox Letdown (UPDATED 4/9/2020)

If you are new to Botox, as I was this past year; I learned a few things about the medication that I thought would be helpful to share with my fellow chronic community.

  • Either it works GREAT for you or it doesn’t! (Common theme amongst migraine treatments)
  • Its EXPENSIVE and insurance will fight you to the death to not cover it!
  • The botox injections themself, are a little painful, but the migraine I get AFTERWARDS is THE WORST–
  • For some individuals, such as myself, botox begins to stop working around week 9–insurance will not cover you for your next treatment till week 12—for three weeks you are in migraine HELL.
  • If the medication works for you (yeah!); over time it SHOULD help you MORE as it builds up in your body.
  • The letdown weeks are horrid–I HAD NO IDEA that this was going to happen–for three straight weeks I was in an awful migraine attack cycle that could not be broken. But my doctor and I “may” have found a solution for that—I’ll keep you posted!

The elusive “Botox Letdown”–was not something that was covered or discussed with me prior to beginning the treatment. If you are new, or are considering this as a treatment option; I would encourage you to discuss this with your doctor!

Prior to moving to North Carolina, our insurance in Oregon REFUSED to cover botox as a viable option for migraine treatment (totally asinine in my opinion)! But, when we moved to North Carolina I discovered that IT was covered by our insurance company (with strings attached OF COURSE). My new doctor believed I would be an excellent candidate for it so after months of paperwork and bickering with insurance I was on my way to trying out a new tool.


My first round went awful, I was in such a bad state from the unknown spinal leak that nothing you threw at my body at that point was going to help it until the leak was fixed.

The second round went ok..seemed to help some but took FOREVER to kick in..I was basically on week 9 before I began seeing any noticeable differences in attacks. Plus, I had just been discharged from the inpatient program m, So my body was in a whirlwind of WTH shock—needing time to heal.

When I went to get my third round—insurance all the sudden denied me—which ensued a 4 month battle of obtaining approval. At this point, I was considering driving to Canada or Mexico for the drug. I was feeling DESPERATE–which is a terrible feeling when in intense pain. IT. WAS.BAD! BUT, I had this tug at my heart that told me to keep trying—-so I pushed forward.

Finally, insurance approved me for my third round, but at this point it was as if I had come back to square one; it had been over 6 months since my last treatment. My neck and shoulder muscles were like concrete…tight, achy and painful.

But being feeling as if I should give this a few more tries, I had my fourth treatment in Summer of 2019–it seemed to help—it did take a few weeks but I began noticing attacks where shorter and less intense—a win in my book! Progress!

As time crept closer to my October treatment..I began to notice that my neck and shoulders at about week 8-9 started having “novocaine-like thaw out feeling”. Attacks started becoming more frequent and by the time I got to week 12 for my 5th round of Botox my body as in full attack mode—and had been that way for several weeks.

After a chat with my doctor we decided to add in a nerve block at week 8-9 to see if that would help extend the effectiveness of Botox—because it’s clear it’s working just need it closer together than 12 weeks—but guess what insurance is won’t cover it (SHOCKING)!

I had my 6th round of Botox in January 2020 (nothing like meeting your deductible RIGHT at the beginning of the new year!). Overall it went very well–Im actually began to notice the small differences in my attack frequency and duration.

I will go for my 7th round of Botox on April 23rd and I have been experiencing the dreaded “letdown” for weeks now–My last round I had nerve blocks done at 4 weeks out from my Botox date and it did seem to help a little bit, but with the Corona Pandemic–this was not an option for me this round. So I have just been muscling through the attacks of the “letdown”.

I’ve put together a list of the top 5 symptoms I’ve noticed when the Botox began swearing off (listed below), as well as how I try to manage these attacks while I wait for my Botox appt. I recognize that everyone’s situations are different—but felt that a list of symptoms could be helpful for someone like me who is a bit of a newbie to Botox!

My 5 symptoms of “Botox Letdown” and Tips on How I Try to Ease Them!

1). My temples become sensitive to touch– I find that they are especially sensitive during an attack. I have found that using my amethyst roller over these areas helps to relieve the pain, as does ice packs and a scalp brush that I use to massage my head and temples!

2). “Thawing out” feeling in occipital ridge area (at base of skull) —If you have ever had dental work and had Novocain it feels similar to this..but much slower and gradual—over several weeks. I have found that laying on my Pranamat (Accupressure mat) twice a day and laying on ice several times a day helps with this.

3). Attacks are worsened in intensity and duration– I find that as I grow closer to the Botox date my attacks are much worse. One way I try to combat this is take medication or rest AS soon as I feel an attack starting, and giving myself LOTS of GRACE during this “letdown” time.

4). Auras increase/hemiplegic attacks increase– during first several weeks after botox–all my auras seem to disappear. BUT as we creep closer to the 12 week mark and time for next round of treatment–I find that I have visual auras, tingling head and hemiplegic attacks (which are TERRIFYING). Stopping auras and hemiplegic attacks are nearly impossible- so again, I try to give myself LOTS of grace and not push myself during the “letdown” period.

5). Overall more tightness and achy in neck and shoulders (my problem areas)– Trying to stay ahead of neck and shoulder tension is always a fighting battle for me with attacks. During the time of the “letdown” I will be especially vigilant about foam rolling, stretching and using my acupressure mat. Epsom salt, magnesium flake and baking soda baths a few times a week also help with this!