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Chronic Headache & Migraine Summit

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19 September 2017

The Art of Letting Go

Letting go isn't always easy.  Sometimes we tend to hold onto things that hurt us or that are doing us a disservice even though we know they are toxic.  Whether they are negative thoughts, bad behaviors, or people who mistreat us - finding the strength to let them go can be difficult because old habits are hard to break.  Maybe it isn't even any of those things we need to let go of.  Trying to break free from old versions of ourselves that hold us back is hard too.

12 September 2017

Hummingbird by Vital Motion | Treatment for #Fibromyalgia #Sponsored #Review

"I have been given this product as part of a product review through my blog, The Migraine Diva. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "

Fibromyalgia hurts and it hurts everywhere. Getting out of bed in the morning can take several minutes because your joints are too stiff and your muscles are sore and achy. Feeling fatigued even before the day has started is a commonality.  When I am in an active flare my body feels like it is being used as a punching bag nonstop. I am in a constant state of exhaustion and the slightest touch hurts.

09 September 2017

Migraine Relief Travel Kit #Sponsored #Review

"I have been given this product as part of a product review through my blog, The Migraine Diva. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "

There is nothing worse than getting hit with a migraine attack while you are out, except being stuck with no relief. So many of us with chronic migraine often have way too many medications to lug around and finding ways to travel with ice packs and anti-nausea meds or relievers can be cumbersome.  If there is an easy and efficient way to treat a migraine attack on the go most of us, if not all of us, are here for it!

07 September 2017

Noah the Narwhal: A Tale of Downs and Ups #Review #Sponsored

Noah the Narwhal: A Tale of Downs and Ups
Living with chronic illness is very unpredictable. Some days we wake up feeling great and others we wake up feeling like our bodies are trying to attack us from the inside out.  That is the life of a spoonie.  Meteing out our spoons so that we don't run out before the day is over.  We also have the challenge of not looking sick when we are, causing those around us to doubt our illness.  So much is expected of us when we look just as healthy as the next person, even on our worst days sometimes.

01 August 2017

Urgent Care - It's A Gamble Every Time

The last thing I need when I go to urgent care is to be treated as a potential drug seeker.  I have a genetic neurological disease which has no cure.  Sometimes, my medications do not stop a migraine attack and I need a more aggressive form of treatment to break it.  As a person living with migraine, I do not need to have unnecessary anxiety each and every time I step foot in an urgent care center or emergency room.

Yesterday was not a good day.  I have been dealing with a migraine attack for about a week.  My prescribed pain medications can only be taken for three days.  After that I pretty much have to suffer through it for at least 5-7 days before taking them again to avoid rebound headaches.  I resort to homeopathic remedies such as ginger tea, plenty of ice packs, essential oils, rest and dark rooms.

My head pain was at a nine for over twelve hours.  The nausea was terrible causing me to vomit and have diarrhea.  I was having dizzy spells and was extremely lightheaded.  I knew that a trip to urgent care was needed.  In a perfect world, that wouldn't cause me to feel any certain type of way.  But as a migraine patient, that is nowhere near the case.

I avoid going to urgent care mostly due to the anxiety it causes.  I have to roll the dice every time I go.  Is it worth the chance of getting a doctor who will not want to treat me? Most people would probably say that it isn't and I totally agree. This is something that the majority of the world does not understand when it comes to migraine.  We risk getting under-treated or not treated at all when we are in legitimate and debilitating pain.

In June, I took a trip to urgent care after a long and stress-inducing day in D.C.  I had just finished being a part of a panel on Capitol Hill to discuss migraine and it caused a major let-down migraine.  As usual, my anxiety was super high as I worried if I would get a compassionate doctor who will follow my protocol.  As soon as the doctor walked into the room I knew he wasn't that guy.  He gave off a vibe that told me that he wanted to do as little as possible to treat me.

After telling him the medications that I have at home, which includes oral toradol, he wanted to only give me a toradol injection.  I handed him my protocol and he took it almost unwillingly.  He obviously did not feel comfortable with it but after some hesitation, he ordered the medications.  Thankfully, I always have very nice and compassionate nurses at my urgent care so they soften the blow a lot.

Part of my protocol is receiving dilaudid.  My neurologist prescribes 1 mg of dilaudid, up to four doses, to break my migraine.  Two doses does the job in combination with the other medications I receive.  That particular day, my pain was at an eight.  After the first dose of dilaudid, my pain only went down to a seven.  The doctor did not want to give me another dose and sent me home with my pain barely reduced saying that my medications at home will be able to help me.

Obviously they were not able to otherwise I wouldn't have even come here.  I was so over it that I didn't argue or push the fact that I am still in severe pain.  I just went home.  I knew he wasn't going to budge on his decision and I have to pick and choose my battles wisely. Why must I even have to deal with this? It's preposterous.

Back to yesterday.  I was in tears before getting to urgent care.  I was in bad shape.  With my Migraine Hat on, migraine binder, and bottle of water in tow, my husband drove me to my appointment.  My anxiety meter was pretty elevated.  I'm never fully relaxed going.  I know it may not work out in my favor.  I get there and the nurse takes my vitals.  As usual, my blood pressure is super high due to my raised anxiety and level of head pain.  After the second try it went down considerably.

The nurses always make it a nicer visit.  They treat me kindly every single time.  It's the doctor I am most concerned with.  I was told the doctor would be in shortly.  Apparently that means 40 minutes.  That is way too much time for my anxiety to spiral out of control. I am super anxious waiting to see which doctor will walk through the door.  The one who will follow my protocol and not be judgmental or the one who barely wants to help me.

Imagine if someone with severe asthma was treated in the same way.  They go to the emergency room because their asthma pumps aren't working to help them breathe and need a breathing treatment.  The last thing they need to worry about is whether or not they will be treated as a drug seeker. They are having difficulty breathing.  Why should they have to prove that they are not "faking it" in order to get treatment because they are addicted to the nebulizer?  Sounds ridiculous doesn't it?  That's pretty much life with migraine in a nutshell.

After my agonizing wait, the doctor finally came in and I got a good vibe from her.  She was very open about my protocol and placed the orders quickly.  I lucked out this time.  No judgment or questions about whether I am doing enough to manage my migraine.  I could finally relax and allow the treatment to do it's job.  But why should I even have to endure such uncertainty at all?

I need all medical professionals to understand that when we decide to get treatment for a severe migraine attack, we really need it.  We are not looking for a fix.  We just want to feel better after going through days of unrelenting pain, lack of sleep, and exhaustion.  Why is that so hard to grasp?  To the doctors and nurses who find it more important to judge us, ask us condescending questions, and to doubt us - you need to really educate yourself on the realness of our disease.  The last thing that I want to contend with after throwing up and crying in pain is your bad attitude.

Even though yesterday worked out, it did not diminish the fact that I had to deal with the possibility that it wouldn't.  It's a crazy situation that people with migraine have to put up with.  Some don't even go seek treatment anymore because it's just not worth the anxiety and anguish. There have been plenty of times where I felt like walking out because the mental anguish was just too much to deal with on top of my physical ailments.

Things need to get better in urgent care and emergency room settings.  It would be nice not having these concerns and anxiety when I need my pain treated. The sad part is, I know it will be like this for a long time.  It makes me so angry that I and others have to deal with this at all.  As long as migraine isn't taken seriously and is seen as just a headache, we will have to endure this type of treatment from medical professionals uneducated in headache disorders.

I will have to continue to advocate for my care relentlessly in all situations.  Even in ones where I can barely speak because the pain is so great.  I will continue to speak honestly about the many obstacles we have to overcome.  It is my hope that we will never have to endure these things in the future.

23 July 2017

Summer Migraines

Summertime is the season where most people enjoy the warm weather, spending the day outdoors, going to the beach or pool, or just lounging out in the sun.  These are things I would like to partake in, but summer for me means intense, long, drawn-out days of pain. There have been two heat waves in two weeks in my neck of the woods with temperatures feeling well over 100°.  Last week I had a migraine attack that lasted three days.  I'm now on day six of the most recent one that started this Tuesday.  As the heat index rises, so does my pain.

19 June 2017

Raising Migraine Awareness on Capitol Hill + Video #RAMigraine #MHAM

Image courtesy of Research!America
Last Thursday I had the amazing opportunity to speak to House and Senate congressional staff about migraine and how it impacts my daily life.  Research!America hosted a briefing on Capitol Hill,The Value of Research and Prevention in Addressing the Societal Burden of Migraine, to focus on developments in research, prevention and treatment, and policies to reduce the burden of this illness.

12 June 2017

Join Me on Capitol Hill! #RAMigraine

Join me this Thursday to attend The Value of Research and Prevention in Addressing The Societal Burden of Migraine Capitol Hill Briefing at the Rayburn House Office Building in Washington, D.C.!  I will be among three other panelists there to discuss the debilitating impact of Migraine.

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