‘Happiness is letting go of what you think your life is supposed to look like, and celebrating it for everything that it is” – Mandy Hale
Y’all… When this chronic illness started I’m not sure I thought I would be happy again with daily migraine attacks robbing me of a life!? Or, at least until I was ‘fixed’, so to speak. But you know what?
Life is hard. It’s hard for everyone in some way. This is just my hard.
With that said, if you know me I’m not one to give up — so my husband Paul and I continue to keep searching for answers which led us to Mayo Clinic in mid-February.
What is Migraine?
Migraines are neurological disorders that can cause nausea, vomiting, and light sensitivity. The duration is either an hour long or days long. The migraine headache can be episodic, occurring once in a while, or a chronic migraine happening daily. Women are most at risk for migraine attacks or headache disorders of any kind.
Migraine Causes
Migraine headaches are largely linked to brain changes and gene changes. Your parents may pass down migraine triggers like sleeplessness, light sensitivity, and weather changes to you. In the past, many researchers believed that migraine headache was due to restricted blood flow.
Now, many people now see it as contributing in some ways but not the main problem. Currently, it’s believed migraines start with an overactive neurotransmitter that triggers your trigeminal and/or occipital nerves which produce pain sensations, what we know as migraine pain.
My Migraine Headache Background
I’ve had migraine headaches my entire life, mostly related to my cycle and known as menstrual migraine. I would get the worst symptoms – sensitivity to light, abdominal pain/ nausea, but the worst was definitely the ‘migraine brain’ that clouded my mind for several days after.
My migraine symptoms would take over and I couldn’t think or concentrate on school or work and felt completely wiped! Since it was only once a month, I managed for almost 20 years after seeing a migraine headache specialist in Ann Arbor, Michigan where I grew up. He got me squared away on a preventative treatment plan at 19 years old and I thought I was good to go!
Chronic Migraine Journey
But the migraine headache pain became chronic and debilitating again about two years ago. If you ask me if I’ve done various preventive treatments or certain prescription medications to help and find relief, I bet I have! (I was actually one of the first Botox for Migraines candidates in 2003 for off-label use).
I’ve also tried hormone therapy, deep dives into my migraine triggers, and various injections for migraine therapy and still found no relief for debilitating chronic migraine. I’ve been to the ER for a ‘migraine cocktail‘ for emergency relief more times than I care to admit…
So, since we ‘exhausted all avenues’ my Dallas docs referred me to Mayo Clinic with ‘retractable migraines’. a.k.a chronic migraine. We waited about three months to snag an appointment, but I was so excited when we did!
Mayo Clinic Update Treating My Migraine Headaches
Our first consultation was on a Monday with a neurologist specializing in rare recurrent migraine headaches. It went ‘just OK’ in my opinion — the doctor was brilliant and my husband loved him, but I’m still trying to stay positive when someone says, “We’re going to get you pain-free days”… Yeah, I’ve heard that before!!!! (Insert eye roll here)
But the doc battled chronic migraine too so he really seemed to understand, which I can appreciate. We changed up my migraine prevention protocol to what he’s done before, and he was able to fully explain everything first-hand.
If I fail this, the next step is most likely occipital nerve ablation. What the heck is that? It’s not the usual nerve block you may have heard of before, it’s going in and freezing the nerves to literally turn these pain suckers OFF. Of course, I want to jump to this migraine treatment ASAP!!
But, the doc explained the ablation has some complications and we need to go through one more HARD attempt at migraine prevention medication first. Similar to epilepsy, migraine is a nervous system disorder causing neurological symptoms in which the brain activity becomes abnormal, or excited. My brain is super sensitive and overly excited, (similar to me! Lol) … so we need to calm the overactive neurotransmitters down. (I learned a lot on this, if you’re interested.)
On Tuesday, we had the MRI’s — both brain and cervical spine. It was a bit of an ordeal as I don’t do well with small spaces, sedatives, or IV contrast. Paul had to dress & wheel me out of there, it was quite a scenario, but we made it! Phew.
Wednesday, we had our follow-up with our Neurologist to review the scans. The good news is the brain looks very clear & healthy. However, my cervical spine imaging showed significant arthritis from C2-C6? AND…. ‘bulging’ in C5 & C6?? The neurologist breezed through this and I was like, ‘WHAT, no wonder my neck hurts like a mother!’??
To be honest, we’re not exactly sure what this means or what the next steps are for me here for the cervical spine. (Note: This didn’t show up on my early c-spine MRI’s, so it’s new … my guess is it’s from being hunched in pain? But we’ll see?)
Thursday we saw the pain management specialist at the St. Mary’s building to discuss my migraine pain long-term. I really liked the doctor here – he had done his research on me and was super friendly and accommodating. Similar to meeting with Neurology, I had done (or am doing) most of the pain management plans reviewed.
Their focus was on non-medicinal efforts such as meditation, massage, acupuncture, neurofeedback, etc. We also discussed Mayo Clinic’s Pain Rehabilitation Center Program — it’s a 3-week stay with an integrated approach to pain medicine, physical therapy, psychology, occupational therapy, and so on.
I looked at the daily schedules — it appears to be a great program, but it lacked some major focus areas, such as nutrition. So, as of now, I don’t plan to go.
Quick Thoughts on Mayo for Migraine Pain
Ok, I know we complain about the cold (and it was wicked cold!) But Mayo Clinic is an amazing facility with the kindest staff and some of the brightest minds in medicine. Being at a state-of-the-art facility can also be a hard place to be for an entire week.
There are sick (very sick) people everywhere you look. It’s hard to see so many individuals fighting hard, coming to a place for their last hopes for a cure or answer.
Besides being emotionally taxing, the campus is really big, and depending on where/when you have appointments you have to take a shuttle or battle the cold. So, each trip can take a little longer than expected and cause extra stress. However, once you’re in the facility the underground sidewalks are super helpful!
Next, I thought Mayo would be a more collaborative approach to patient care — nope! I suppose since I was already diagnosed with ‘chronic migraine’ I didn’t receive the well rounded care that I was expecting. (I was told when scheduling I would be set up with Neurology first, and that doctor would review my case and refer me out to the other practice areas needed during the week.)
Let’s just say that I never got into the other physicians I needed to see during our stay AND the virtual appointments that we were able to get scheduled never happened. Apparently, all new patient appointments are to be done IN PERSON. I was super disappointed as I was supposed to see Women’s Health (Menopause & Hormones Specialist) and Endocrinology docs as well. 🙁
If there is one thing I’ve learned about Migraine headaches, it’s that it’s not an isolated event. Migraine attacks are caused by a number of things happening in our body from our hormones to allergies, to autoimmune diseases and stress to visual disturbances and food cravings/triggers! To treat migraines is to treat the whole body.
So, if you’re looking for a full body, root cause, holistic approach to your migraine headaches then Mayo Clinic is probably not for you. It wasn’t the place for me.
Managing Migraine Symptoms & Next Steps
When we got home, I was so emotionally drained and physically exhausted! 😞 … But also not ready to give up and be diagnosed with chronic migraine forever! So, while I started the Mayo treatment I also started to reach out to new docs and explore different ‘out of the box’ approaches.
I was starting to get desperate sitting alone in my migraine pain.
Before I had been hanging onto hope that Mayo Clinic would be my cure for migraine headaches and I had given up researching all other options.
Even though my migraine symptoms continued with a vengeance, I wanted so bad for the doctors in Rochester to find the answers for me.
But, I picked myself back up at home and I had about six or seven appointments with three of those being new doctors – not to mention a TON of new tests, including a thermography scan.
We’re learning even more about my body and why it might be fighting against me so hard and stirring up these migraine headaches on the daily. More to come, I’m sure!
Meanwhile, I’ve connected with other chronic illness warriors and learned about being a Spoonie! (A common name given to those who suffer chronic illness) I’m learning from my fellow spoonies that life isn’t over, it’s just going to be different! And that’s a-ok!
My husband Paul has been AMAZING and incredibly supportive as this has been very overwhelming for me. I’m really not sure where I would be without him! I know this is hard on him too but he’s been so strong for us both. He’s my rock, my world, my everything!
And to ALL Y’ALL who reached out, prayed and lifted me up during this time I can’t thank you enough. I feel your prayers!!!!!! ❤️❤️
xo, jules
