Miss Migraine Runs: Part Two

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. June is National Migraine and Headache Awareness Month. Help me raise $300 to support migraine research and awareness!

Despite my runner’s knee not really being cleared up, we decided to wake up at 5 a.m. and resume our 5k training program this morning.

Despite painful knees, I’ve tried to still do some form of exercise 5 days a week, whether it’s going for a walk or using the elliptical.

I am not a morning person. Never have been, probably never will be. I’d much rather run at 8 or 9 p.m. than wake up before the freaking sun rises. But, I’m getting ready for a monologue show in a few weeks, and I’ve got evening rehearsals all this week and next week. Early morning is the only time we could run, so that’s what we did.

And hey–it wasn’t as awful as I expected it to be! Waking up was easy enough. I laid my running clothes out last night, so all I had to do was pull them on. I ate an apple, leashed up the dog, and off we went.

Over the past three months, I’ve increased my overall activity level. Each bar represents a week’s worth of steps.

This week the program has us running varying intervals of 90 seconds and 3 minutes. The first set of runs were fine. My knees ached a little but it wasn’t bad. But then we did the second set, and I definitely should have stopped because it felt like my knees were on fire. But I am stubborn as fuck, so I finished the workout and then spent a good long while icing my knees. Surprisingly now they feel pretty okay, which means I’ll probably be stupid and run again Wednesday morning.

Running and walking has also been helping me with the grief of losing my corgi dog Lexi–it’s not that I miss her less or feel less sad, it’s just that being outside and working my body provides a good expression for those emotions. I think it’s helping Jaina cope, as well.

Now I just need my knees to stop hurting!

 

Every end is a new beginning

Lexi sitting by Lake Elizabeth in Allegheny Commons Park.

Monday, June 4th, we said goodbye Lexi.

Her life was full of things she loved, and we strove to maintain her quality of life right to the end. With degenerative myelopathy, there’s not really a tipping point. It’s a slow, steady progression that robs the dog of her mobility and eventually her breath. Although the disease itself is not painful, in the final stages of respiratory failure and esophageal paralysis, the dog suffers and the chances for a life-threatening complication are high.

Over the past two weeks, we noticed that sometimes she would try to bark, and nothing would come out. We noticed that she got overheated even in the air conditioning when it was in the low 70s outside. She was too weak to walk in her harness anymore. She flipped over a few times and couldn’t right herself. Her eating slowed down. She was less comfortable, or it took a lot to make her comfortable.

I spoke with our veterinary neurologist. She said, “I know it’s hard because she’s still Lexi, but from this point, no time is the wrong time to say goodbye.”

I looked at Lexi, and Lexi looked at me. Dogs can’t speak, but in that moment we communicated. She was ready. I was as ready as I was ever going to be. I called Lap of Love, an in-home veterinary hospice care and euthanasia provider. We scheduled the appointment. And then we went out and had fun.

D.J. came home, and we took Lexi and Jaina to Allegheny Commons Park. Lexi rode in my lap so that she could stick her nose out the window and smell the fresh air. It was a beautiful day–blue skies, not too hot, not too humid. Perfect weather for sniffing. Her body felt so warm against mine. She rested her head on my arm, and I wanted to stay like that forever. Lexi always sniffed with her whole nose, inhaling deeply and letting out big puffs of air–snorfing, as we called it.

We pulled her in the wagon around the Aviary and the dog park where she herded so many other dogs in her younger years. We walked around Lake Elizabeth. She sniffed the other dog smells, the duck and geese smells, and the green tree smells. We sat in the grass together, just sitting, just enjoying the presence of us as a family.

A selfie of the four of us.

Together, the four of us have hiked National Parks, climbed mountains, driven halfway across the country, explored the city, and so much more. We’ve cuddled in bed together, the four of us crammed into our queen bed, Jaina usually curled into a ball and Lexi usually spread out to her full length, taking up the most space of anyone even though she was the smallest. Lexi always knew when I was sick or hurting, and she would nudge me with her nose to distract me with her cuteness. She would also nudge us if she wanted pets or a treat–she was never shy about telling us what her demands were.

When an ambulance drove by the park, we all howled together, me and Lexi and Jaina. We took selfies and laughed. D.J. helped Lexi explore by supporting her so she could “walk”. Although she couldn’t pee on her own anymore, we expressed her bladder a little at a time so she could leave her scent around “her” territory, like she used to do during our daily park walks.

Lexi was too weak to use her harness anymore, but she could get around a little with more support from one of her human servants.

After the park, we drove to Starbucks and the dogs got extra-large pupaccinos. When we got home, we enjoyed a Feast of Cheese, and then we sat outside until the vet arrived.

Dr. Aspen was kind and gentle, and made Lexi’s transition peaceful and easy. We sat in her favorite spot by the table where I write, and I held her in my lap. I petted her ears and her head, stroked her fur, and kissed her nose. I told her how much I loved her, but of course she already knew.

Jaina smelled Lexi’s body at the end. We curled her up into a basket and wrapped her in a blanket, and the three of us walked her out to Dr. Aspen’s car. Jaina was sad, but she understood what had happened. She’s been a little mopey over the past week, but she’s not confused or distressed.

This week we picked up Lexi’s ashes. I still cry every day, usually many times every day. Jaina has been sticking to my side like glue. I suspect she is both sad herself and senses that I am sad, so we have been comforting each other.

The house feels so quiet and empty without Lexi. She may have been a short dog, but her personality was huge. She knew the sound of our car and would start barking her “welcome home” bark as soon as we shut the car doors. I set my watch by her–she was always on top of breakfast and dinner times, outside time, and bed time. Sometimes I think I hear her whining, but of course it’s a bird outside (perhaps a cat bird imitating her?).

Saying goodbye to someone you love is never easy. I don’t believe in heaven, and the Bible says animals don’t have souls anyway. I do believe that death is transition, that it is a beginning that comes after the end, but what form that beginning takes I can only guess at. If nothing else, Lexi helped me become who I am today, and my life would have been much different without her. I can feel her presence everywhere–not just in the physical spaces she inhabited, but in the deepest places of my soul.

I miss her. I miss her happy barks and the way she snored while she slept. I miss her corgi waddle and her perfect downward-facing dog stretches. I miss her grrs and her nudges. I miss the soft silkiness of her fur and holding her paw in my hand. I miss the cold wetness of her nose and the warmth of her eyes that saw me in a way no one else could.

I miss her, I miss her, I miss her. I know I always will. But she is my dog, and she will always be my dog. I wouldn’t change our life together for anything. I am full of joy and laughter and gratitude for the fourteen years we shared, even though I’m crying as I write this.

Every end is a new beginning.

Miss Migraine: FDA approves first true migraine preventive

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine.

Guys. This is huge. The FDA just approved the first-ever drug designed specifically to prevent migraines! The cons are that it’s not as effective as many would prefer and it’s very, very expensive, but the pros are that we finally have a drug aimed at our actual disease instead of a bunch of drugs for other stuff that just happen to help with migraines some of the time for some people.

I have an appointment with my migraine specialist on Wednesday, and I’m definitely going to discuss this with her. Unfortunately, as mentioned, my insurance probably won’t cover it. And it’s nearly $7,000 per year. From The New York Times:

The drug, Aimovig, made by Amgen and Novartis, is a monthly injection with a device similar to an insulin pen. The list price will be $6,900 a year, and Amgen said the drug will be available to patients within a week.

Aimovig blocks a protein fragment, CGRP, that instigates and perpetuates migraines. Three other companies — Lilly, Teva and Alder — have similar medicines in the final stages of study or awaiting F.D.A. approval.

Millions of people experience severe migraines so often that they are disabled and in despair. These drugs do not prevent all migraine attacks, but can make them less severe and can reduce their frequency by 50 percent or more.

I personally have tried just about every drug used for migraine prevention, separately and in various combinations. I’ve dealt with all the side effects the Times article mentions (“mental fogginess, sedation, weight gain, sexual dysfunction and dry mouth leading to cavities”), plus many more.

Here’s a short list of treatments I’ve tried since 2008 and their side effects:

  • Topamax/topiramate (anti-seizure): Aphasia (forgetting words, trouble finding words), makes soda taste bad, upset my stomach to the point I couldn’t eat, loss of potassium/eye-twitching
  • Zonegran/zonisamide (anti-seizure): Aphasia, makes soda taste bad, reduced appetite causing unhealthy weight loss, made my limbs tingle and go numb, loss of potassium/eye-twitching
  • Effexor/venlafaxine (anti-depressant): Major insomnia, sexual dysfunction, literally made me feel insane and like I was crawling out of my skin, heart palpitations
  • Elavil/amitriptyline (anti-depressant): Dry mouth
  • Neurontin/gabapentine (anti-seizure): Weight gain, swelling, drowsiness, loss of potassium/eye-twitching
  • Verapamil (calcium-channel blocker for blood pressure): Dangerous swelling in joints, especially ankles and feet (to the point my shoes didn’t fit)
  • Pamelor/nortriptyline (anti-depressant): Weight gain, insomnia, fatigue/drowsiness (oh, the irony!)
  • Prozac/fluoxetine (anti-depressant): Weight gain, increased anxiety

All these drugs have sucked, and most have been ineffective. Prozac seems to be the most effective, but the weight gain and increased anxiety makes my life difficult in other ways. And of course, it’s not perfect. I still have around 2 severe migraines per week.

It’s likely that because I’m in a decent (for me) place with my migraines right now (only 2 severe migraines per week instead of 3-5!) and because of the cost and newness of the drug, my doctor will keep me on the treatment regimen I’m on. This consists of two anti-depressants (Prozac/fluoxetine and Pamelor/nortriptyline), a B2 supplement and Co-enzyme Q-10. As the Times article mentions, the side effects of the two anti-depressants have been 50+ pounds of weight gain, along with insomnia and increased anxiety.

But whether or not my doctor and I decide to try Aimovig, the fact that pharmaceutical companies spent money and time researching and developing a migraine preventive is fucking huge. With further research and development, I’m hopeful this class of drugs will be made more effective, that they will study long-term effects, and that people like me and 37 million other Americans might actually get a treatment that works.

Want to help make this happen? June is National Migraine and Headache Awareness Month, and I’m going to — *gulp* — run to raise funds for migraine research through Miles for Migraine. I’ll post more details about my running plans in a later post, but you can still support my efforts in the meantime through my fundraising page.