What’s your diagnosis and where does that lead you with Migraine?

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Millions of people are diagnosed with migraine and every case is different.  So what’s your diagnosis?  What’s my diagnosis?  What does it mean to be diagnosed and how does that help?  Here’s my non-medical opinion.

I have my Master’s degree in special education.  It has been really helpful in understanding how the brain works, fails and where diagnosis and treatment can lead.  I think an example that I can best use to describe the migraine spectrum is comparing Autism to Migraine.  

If you have ever met someone diagnosed with Autism, you understand that that person is an individual and like no one else (and aren’t we all?).  Although, these individuals possess some similar factors that place them onto the Autism spectrum.  Does every person with Autism look the same, act the same, react the same, learn the same way, and have the same health and reactions to treatment?  The answer is an obvious no.  Where one person may seem to have some slight social issues and not much more, another individual may need 100% care for various extreme behaviors.  You may have a full conversation with one person and another may be completely nonverbal and ambivalent to personal interactions.  While one person may see improvement with dietary and behavioral therapy others may require heavy medications and need full time care with little improvement.  Everyone is different!

I have seen my neurologist for many years and I decided to ask her what my diagnosis was recently.  I knew the answer was a Chronic Migraine sufferer with neck and shoulder issues caused from migraines which is called Torticollis.  At the beginning, it was important to be diagnosed with something.  It gave me great relief that I, indeed, was sick and not making it up issues as I was led to believe by so many.  With my diagnosis I felt vindicated and believed since I was diagnosed, I would be cured.  Years and years later, I know better.  My diagnosis is no longer as important as my journey.   I have been through so many medications, therapies, and procedures that I’m not as concerned about my diagnosis versus my treatment now.

So why ask about my diagnosis?  Like I said, at the beginning it was huge!  It provided me a starting point and that is what seems to be the best place to start.  Just like people diagnosed with Autism, it’s only the beginning and an idea of where to begin with therapies, tests, treatments and more.  It puts me into a category that I need to find where I fit.  I no longer go into my neurologist to look for a cure.  I don’t think she is going to hand me a script for a pill that will make my disease go away.  I was stuck in this mindset for years! 

I now know it takes work!  Just like in teaching,  I know I can help  at school but work needs to be done at home.  They can’t come to me to solve their shortcomings like I can’t expect my doctor to help me without putting in the work myself.  My diagnosis has become the place I started and the road that I have travelled. 

I helped with the process of diagnosing students and I had parents fight putting a label on their child.  All of us have labels. My diagnosis doesn’t define me.   I think it’s what you do with knowledge of your label and what you do with it.  You have a choice to ignore it, to get more opinions, follow your path, and problem solve along the way.  Once I realized I wasn’t going to be cured and that I needed to fight with a well-rounded approach of many therapies and life style changes, I was empowered.  My label is just part of who I am.  I am a mom, a wife, a daughter, a sister, an aunt, a friend, a teacher, a blogger, a dog and chocolate lover, a travel enthusiast, a Chronic Migraine sufferer and so much more.

What’s your diagnosis? 

How do you feel it defines your journey? 

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What do you do when your doctor isn’t listening?

 

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I need a team that will Rally Together!

I have been going to the same neurologist for over 10 years.  I love my doctor, my nurse and the front office.  My nurse  was the first people to know I was pregnant.   There were hugs, excitement and nervousness, of course, but they were with me all the way.  They were the first to tell me “I’m not nuts.”  They were like family to me.  They have kept the office open on holidays for emergency visits, called in scripts and made me feel like we were a TEAM.  These are things I’ll never forget.

 

Unfortunately, recently the front office has changed and most dramatically, my doctor left.  I was totally dismayed when she left but understood her reasoning and believed that I would be left in good hands. 

Without bashing the new doctor, I will say that she and I don’t seem to mesh.  She has been sarcastic with me, didn’t acknowledge what I had been doing for the last 10 years, didn’t listen to my concerns and passed them off as unimportant.  I had a knot in my stomach leaving after the few times I saw her.

I have not looked for a new neurologist yet because I still LOVE my nurse and plan to only work with her.  Does this sound crazy to not want to see a doctor?  At this point, I figure, my nurse knows me well.  She listens to me, understands me and I can move forward with her.  I trust being in her care and that’s what I need right now.

With this said, I found it to be an opportunity to try different options.  Maybe I’ve been relying on my doctor too much.  Maybe I should seek answers elsewhere and get a bit uncomfortable stepping away from what I know. 

So here’s what I’ve done:

Acupuncture

Immunologist/Allergist

Massage (which I have been doing for a while but will report on)

and am continuing my search

 

In an effort to continue my New Year’s “resolution” to solve a problem, dispute, or contentious matter, I’m looking in new directions.  This is my year of discoveries!

Who else have you seen besides a neurologist/headache specialist to help with you migraine and headache concerns?

Thankfuls to remember and add to


Thank you to everyone who participated in sharing your thankfuls during the month of November.  Here are a few that I hope to look back on during the year to be remind of how much there is to be grateful for!  Please feel free to comment and add on to our list.

“I want to thank you for opening up about your journey.  To find you and to know you can function as a mother, human being and to love life even after 25 years has been so encouraging.  I have not found this before.  But when I have read your blog I feel there is hope as a mother, a nurse and wife.  Thank you in many ways!”

“I’m so happy you made this post!  I think you have the most amazing positive attitude by always seeking out the good things in life despite the pain!  I am exceedingly thankful for the love of my son and two little bunnies who cuddle with me when I need to be touched.  I am thankful that I am able to live near the ocean and travel there to feel the healing power of nature when I need it most.  And I’m thankful for the empowering influence of woman like you on the internet!”

“I am thankful I found your blog!  I think you may be my migraine twin.  As I read your posts, it is like I wrote them.  I am a year older than you but have not had a baby yet, mostly because I am terrified of migraines during pregnancy.  It is encouraging to hear your stories.  Thanks for posting!”

“Thank you for sharing this!   I can relate 100%.   I am thankful for my pain and who I have become because of it.”

“I opened up two gifts this morning, my eyes.  I’m grateful for that.”

“I’m thankful to be alive.  A dear friend is in her final days….each moment spent with her is a reminder of how precious life is, even when living with pain.”

“I am thankful I have great friends that are here to celebrate with me even though we only see each other a few times a year.”

“I am thankful for a full day here and there without a migraine.  I cherish those and makes me more grateful for a pain free day.”

“The roof over my head.  My family and friends that I’m able to advocate for myself and others.”

“I am thankful that I still have my mom alive at 91.  And I am very thankful for my grandchildren.”

“I am thankful for a peaceful room and my medication when I have migraines”

“Bless you for your kind caring heart!”

I am thankful for:

“Loving partner, family friends, warm bed, and migraine awareness spread.”

“My fiancé, my family, good doctors (there are so few).”

“Food!”

“Your blog posts that make me cry”

“Waking up and eating”

“Food, husband, kids, best friend.”

 

“Sow gratitude. Reap. Joy”

What are you thankful 

for?

 

 

 

I spend my free time talking to insurance, pharmacies and doctor’s offices

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Am I the only one who uses her free time talking to insurance, specialty pharmacy or a doctor’s office?  I find that I spend a lot of time on the phone with these places.

Talking to my insurance company is a really frustrating situation.  It seems like no one seems to have exact clear answers.  I spend most of my time being transferred, re explaining my situation and receiving complicated documents.  Documents all seem to be labeled differently.  My insurance company wants form ABC then I call my doctor’s office and they either don’t know what I’m talking about or respond with, “Oh, do you mean DEF form?”  I’m not a doctor nor in the insurance field so I am confused often and go in circles.

Along with the confusing verbiage, I’m in pain when speaking with these individuals.  I take notes when we talk so I can rearticulate to the next person but don’t always know what it means.

Even when I can clearly articulate my situation, my insurance company loves to claim my treatments as “experimental.”  Being that a variety of medications are used to treat migraine but specifically designed for other health impairments (such as seizures, depression, high blood pressure etc.) insurance companies will not cover it.  Even if I have taken the medication and found success, it’s still “experimental.”  My response is “I have experimented and know it works.”  Yet this is not enough evidence to cover my costs.

So I spend time making more phone calls, filling out and gathering more forms and appealing the denial.  Even when I appeal, I have never had a denial reversed.  So I pay out of pocket or don’t receive the treatment I need.

I also receive many phone calls.  I have my pharmacy automated system call me daily.  I know very few phone numbers by heart, but my local CVS is one of them.  I also get reminder calls about an upcoming appointment or returned phone call from a nurse. 

I spend so much of my free time on the phone often going in circles.  So I’m confused in pain, talking to people with in consistent information or information that leads me to more phone calls.

Am I the only one who spends her free time like this?  I’ll check your response later; I’ve got to take this call first……

Does having a Cold or Sinus Infection trigger a Migraine?

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I get severe sinus infections every year!  I have had sinus surgery and still get sinus infections!  They are a huge trigger for my migraines and this season has been no different.  I was once told that I’m allergic to viruses and get very sick when I contract an infection like a cold, sinus infection or the flu.  When I  get sick, it always ends in a migraine.  My sinus infection was treated with an antibiotic and ended with a cycle of migraine.

Prior to that, I had been burning my candle from both ends, so to speak,  and got a cold. The first day I was wiped out with no energy, lost my voice, and was overall down and out.  The following days I continued to cough and had other various cold like symptoms.  I have to say, colds are no fun and I’m glad I don’t get them often.  It really was more annoying than anything else though.  I was just ready for it to be done.  I could continue on with my life but it slowed me down a bit.

Here’s the difference between a cold and my everyday life….migraines!  I tried not to take a lot of over the counter (OTC) cold meds because I really don’t like to take OTCs in general.  I lived a period of my life getting rebound headaches not understanding the repercussions of OTCs and I have not taken them since.   So med free, I had a coughing fit one night.  This fit triggered a migraine and I immediately went into abort migraine mode.

I actually thought to myself, “wow, a cold is annoying but a migraine sends true fear through me.”  The proverbial trick or treat.   A cold is no treat, but with a migraine looming I took it as one.  My trick being pain, pain, pain, and I wasn’t falling for it.  I had  resisted taking meds all week but once the migraine hit I immediately took what I hoped would be effective.

With the coughing, lack of sleep, stuffy head turned sinus infection I knew a migraine would not be far away.  I went to the doctor to confirm a sinus infection and start an antibiotic.  I never feel better immediately on antibiotics and once they kicked in they started a migraine cycle for me that last 3 days.

So why can’t I just get a cold?  Like I said, it’s no fun at all (especially with 2 children that also have colds and sinus infections) but having a simple cold made me feel almost normal.   It was the migraine cycle that ended it that was the worst.  Being sick is so hard but combined with chronic migraine it makes the battle all that harder!

 

Zecuity for Migraine treatment

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Recently I shared my experience taking Zecuity, a new medication, with New Life Outlook.

It’s an informative experience that you can learn from.

Check it out and tell me your thoughts.

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Zecuity via My Migraine Life

Living with pain haze, brain fog, mommy brain and Migraine

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Sometimes, things just look a bit hazy

 

Call it mommy brain. Call it pain haze. When I have a migraine I’m a bit fuzzy to say the least.

I got a migraine after the 4th of July (which was not a surprise, I get a migraine at every holiday) that lasted a few days and was severe. I spent the remainder of my week recovering. So when I woke up again with another migraine I was totally frustrated.

My husband had left for a trip before I woke up and I went directly into survival mode. I took my meds, iced and drank coffee before my kids got up. By the time they got up, I was able to put on a happy face and told myself I was going to make it through the day and to keep on fighting. I talk to myself and my migraines a lot!

So I decided to continue on with what I planned for the day and started addressing thank you notes that I had written for my daughter’s birthday. As I did this, I responded to a wedding invitation. The invitation already had a stamp on it and at this point I realized I had addressed my envelopes backwards. I had reversed the stamp and return address and would not have noticed had I not seen an example of the correct way to address an envelope. Uh, how frustrating.

Was it the end of the world, of course not. It was just an honest mistake but it frustrated me. When I was on preventatives I made mistakes like this a lot (See why I don’t take preventatives). Now that I’m not, I try to keep my head as clear as possible but controlling the pain is a priority. I have many friends who do not suffer and tell me they are the same way with “mommy brain”.

Call it what you will, it’s mommy brain, pain haze, migraine hangover, busy life and fogginess. The problem with suffering is that I never know what’s normal. What is normal anyways? Knowing how to address an envelope is normal, so maybe I’m a bit hazy. I guess I could be called worse.

What have you done in a pain haze?