25 big reasons to hope | MHAM Blogging Challenge

 

This morning I celebrate a very special occasion. 

It has been 25 days since my last migraine attack.

In Migraine World, that’s a big number that’s worth a celebration. It gives me a lot of hope to share this with you. A few days ago I wrote that I wanted a hope that would spread like wildfire. Maybe this will do it.

Do you have any idea how much 25 days is worth?

This is my fourth year participating in the Blogging Challenge. When I started blogging in 2012, I was having that many migraine attacks each month. I’d been that way for years without any hope of getting better. I had been forced to give up a job I loved and wondered if I would ever get out of bed again.

That year I went through…

  • five different doctors
  • six different preventives
  • two rounds of prednisone
  • four ER visits
  • four more to Urgent Care
  • two sleep studies
  • two MRIs
  • three EMGs
  • and 20 weeks of physical therapy.

I ended the year with 23 headache days.

Near the end of that year, I remember politely asking the latest doctor if I was a candidate for Botox. He assured me that I was not, explaining that the failed diagnostic trial for trigger site release surgery proved Botox wouldn’t work. I accepted his answer, but in the back of my mind I kept wondering if he was wrong. Unbelievably, I stuck around for six months into the next year and never brought up the subject again.

Turning a corner…

Two years ago, I spent the first week of the Blogging Challenge in a hospital bed getting infusion therapy. The rest of the month I spent stuck on the couch in excruciating pain, waiting for the new preventive to kick in. With the help of a true headache specialist, that second year ended with only 13 headache days. It took a round of steroid infusions, a new preventive, and lot of dose adjusting to get there. Still, it was real progress, so I hung on.

Fragile acceptance

By the time last year’s Blogging Challenge rolled around, I had embraced an acceptance of my circumstance, thinking there were no better options. I had convinced myself to hold on until the new CGRP-blocking treatments finally gained FDA approval. Yet questions about Botox remained. Near the end of that year, my doctor had already added a second preventive and was talking about another round of prednisone.

I couldn’t take it anymore.

I had to ask just one more doctor about the possibility of Botox. This time, I came prepared to argue my case. I stated that Chronic Migraine is a valid diagnosis even if preventive treatments brought me below the 15-day threshold. Without the medicine, I reminded him, I would go right back up to chronic levels. Then I pointed out that even with two preventives, I was still having 15 or more headache days each month. He was attentive and patient.

Then came time for that well-rehearsed question:

“Is there any medical reason why I am not a candidate for Botox?

You could have heard my jaw hit the floor when he answered, “Actually I think you’d do quite well on Botox.”

I wanted to scream, “Are you #!%@ kidding me? I wasted three years trying treatment after treatment, gaining over 60 lbs. from prednisone that I can’t lose, and NOW you tell me I’m a good candidate for Botox!”

My sweet doctor wasn’t to blame for all of that. I was angrier at myself for turning down the 6-month wait for an appointment back in 2012. I was in a hurry for answers, wanted to see someone right away, and didn’t think he was worth the wait. Boy, was I wrong.

“I want you to see someone with lots of experience.”

His voice is like silk, so I listened to his explanation with ease.

He hadn’t been trained to administer Botox. His new associate had received some basic training, but not enough for him to feel comfortable making the recommendation. He carefully explained that outcomes improve when the doctor is skilled. Wanting me to have the best chance of success, he asked if I’d be willing to see another doctor. When I agreed, he gave me a few names of doctors he trusted, wished me luck, and made me promise to keep him updated.

Bouncing out of his office, I didn’t waste any time getting started. I made phone calls that day, scored a screening appointment within the week, and my first round of injections before Christmas.

That was the first holiday in 15 years I didn’t spend in bed with non-stop migraine attacks.

You know what I appreciate most?

I have a doctor with advanced training in neurology and psychiatry who has no ego. My well-being is his goal. He doesn’t have to refer to some chart to remember my name, my treatments, or even my granddaughter’s name. He asks about my family, my blogging, and wants to know the answers. He and my new “Botox doctor” even approve of my Theraspecs, too.

25 days is a big deal.

My doctors helped me get there. Find the right ones and you can, too.


The Migraine and Headache Awareness Month Blog Challenge
is organized by the American Headache and Migraine Association.


#MHAM, #MHAMBC, #migraine, #clusterheadache, #chronicmigraine

One thought on “25 big reasons to hope | MHAM Blogging Challenge

  1. Tammi: I reposted your piece…

    Here is what I wrote before it:

    What a wonderful piece by Tammi Rome. It is often very difficult to find the right doctor, especially when it comes down to certain types of migraines and the doctors training, knowledge, and abilities. And finding a doctor who truly listens and takes in all aspects of ones life is rare but so crucial not just for migraineurs, but anyone with a “hidden” chronic condition. So many different aspects of our lives affect so many different aspects of our medical, mental, and physical health. Everything is always interconnected in one sense or another.

    I commend Tammi for sticking with it. It can be frustrating but rewarding if/when it all comes together.

    #chronic migraine. #cluster headaches #sinus migraine #migraine without aura

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