Migraine 101

 

 

The word migraine is a familiar one to most yet there is a lot of confusion surrounding them. Migraines are anything but straightforward. In fact, many medical professionals debate over the definition, cause, and treatment.

The basic foundation of the definition of a migraine according to Webster dictionary is a condition marked by recurring moderate to severe headache with throbbing pain that usually lasts from four hours to three days, typically begins on one side of the head but may spread to both sides, is often accompanied by a variety of symptoms. Some people believe that it is a genetic neurological disease.

Of course, there can be other causes in addition to genetics such as stress, trauma, or chronic illness. Many times the cause of a migraine disorder is unknown.

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There are a total of four stages of a migraine, but not everyone encounters each stage which is prodrome, aura, headache, and post-drome. First, prodrome occurs one or two days before a migraine. Many people do not experience aura which is nervous system symptoms before or during a migraine. The stage headache also is known as the attack is an actual migraine which can last anywhere from 4 hours to 72 hours if untreated according to Mayo Clinic. Lastly, post-drome occurs afterward for around 24 hours.

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Being able to recognize the signs of a migraine are essential. A migraine can be accompanied by an array of symptoms.

Some symptoms include

  • extreme pain,
  • light smell or sound sensitivity
  • nausea
  • vomiting
  • pain on one side
  • pain down the neck
  • vision changes
  • numbness
  • Vertigo
  • Feeling lightheaded or dizzy
  • Puffy eyelid
  • Difficulty concentrating
  • Fatigue
  • Diarrhea – constipation
  • Mood changes
  • Food cravings
  • Hives
  • Fever

Symptoms of a migraine are vastly different for every person. Furthermore, symptoms may vary different episodes. Likewise, triggers are unique to everyone.

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Some triggers include but are not limited to

  • Stress
  • Hormonal Changes
  • Weather
  • Foods such as aged cheeses, salty foods and processed foods
  • Skipping Meals
  • Dehydration
  • Lack of Sleep
  • Additives in foods like MSG
  • Drinks like alcohol or caffeine
  • Sensory stimuli. Bright lights and sun glare can induce migraines, as can loud sounds. Strong smells — including perfume, or paint thinner

 

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The majority of the time migraines are diagnosed on a clinical exam and from discussing episodes with a physician. Additionally, they will consider medical history, symptoms, and perform a neurological examination. Other medical tests may be ordered to rule out another illness or if the pain seems unreasonably severe or is unusual.

 

 

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Undercover Zebra

I am so excited to have an amazing EDS warrior guest post today, Hana. Please share to help us raise awareness for this rare disease.
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Ever hear of Undercover Boss? Well, this is Undercover Zebra: Where chronic illness warriors go undercover as healthy individuals to chase their dreams in the real world. On this episode, we have Hana Belanger, an 18-year-old girl with the main diagnosis of  Ehlers-Danlos Syndrome Hypermobility Type (hEDS) who dreams of being a cinematographer in the music industry. As an adolescent, she must figure out her own identity, chase her dreams, and not let a rare disease define her. If you think this to be a challenging feat, then you are right. She is…an undercover zebra.
I start every morning the same way, not wanting to get out of bed. Whether it be my 5:45 school alarm to Bowling For Soup’s “High School Never Ends” or sleeping in past noon on the weekends, the act of waking up is just another arduous chore no likes to endure. So far, just like any other teenager in the world, or really, any non-morning person in society.
Once I finally persuade myself it is worth getting up, I “oil” my joints with either Icy Hot or Arctic Ice analgesic gel. Whichever I just happen to have on my bedside table at the moment. Hypermobility is a symptom of EDS, however, in the morning I find that my joints much rather be stiff with pain, like the Tin Man from The Wizard of Oz. I also tend to take this time to pop back in any joints that may have popped out of place while sleeping the night before. Got to love all those constant dislocations and subluxations. More symptoms due to the faulty collagen my body produces. Mornings with a connective tissue are never boring.
Next step is getting dressed. My favorite comfortable get up has to be pajamas, especially my zebra print ones. Sadly, school dress code does not allow for pj’s. Next best outfit of choice? a baggy band t-shirt and a pair of leggings. Don’t forget to accessorize with wristbands, a mood stone choker, and a plethora of braces and KT tape to keep all those joints in place. Pretty sure my joints like to go out more than I do. I always am found wearing my knee braces, but my collection expands to wrist braces, ankle braces, a back brace, and even a neck brace. I also have a cane I decorated in zebra print duct tape because when you need some extra support you have to make sure its cripple swag awesome.
My morning concludes with the breakfast of champions: AKA medication and vitamins. Then, on school days, I rush off to spend 6 long hours so I may be educated enough to graduate. After 12 years of this grueling routine, it does become tedious. I also have a work study internship with my local cable access station, a slam poet, and freelance videographer. The last three are the most fun I believe and give me a huge platform to be myself. When I am on stage or behind a camera I do not feel like the sick kid. I feel like a poet. I feel like a professional videographer. I feel…human.
Many days it is hard to hide the pain I am going through. EDS likes to throw curve balls more than Alton Brown on his show “Cutthroat Kitchen.” Often I wake up with migraines and nausea, which takes hours and even sometimes all day, despite medication. I have injured myself in school walking to lunch and working a one-hour film shoot. It’s as if EDS does not want me to live my dream.
But I will not cave into this awful disorder. That wouldn’t be very punk rock of me to give in. I know my limits and I go as close to the line without crossing over. I make sacrifices when it is safe to do so to enjoy myself. I have been to music festivals and concerts, filmed all day events, went to my Junior Prom, etc. EDS does not have to rule how I live. I just have to adapt to my circumstances in order to survive.
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Illness Awareness Month

Illness awareness months are a big deal providing an avenue for education. Furthermore, it gives those enduring the illness a set apart time to celebrate all the victories they have had over their illness. It seems more socially acceptable to take off the healthy person mask revealing how life is with a monster on the loss inside. Our awareness month also gives us the much-needed reminder that indeed we are not alone despite the feeling of isolation. It is a cracked door allowing outsiders to get a tiny glimpse into living with a chronic illness.

May is one of those months that someone was like let’s see how many illnesses we can raise awareness for in this month and they might have been a bit overzealous. On one hand, it’s great, especially if the majority of your illnesses have the same awareness month. On the other hand, it is a bit much in a short month.

With a complex illness, you could easily take a year or more talking about the illness, testing, medications, and daily living. Times that by over 12 is hectic. To complicate things a bit more the majority of us have more than one chronic illness!

  • American Stroke Awareness Month (promoted by the National Stroke Association)
  • Arthritis Awareness Month
  • National Asthma and Allergy Awareness Month
  • National Celiac Disease Awareness Month
  • Hepatitis Awareness Month
  • Lupus Awareness Month (promoted by the Lupus Foundation of America)
  • Melanoma/Skin Cancer Detection and Prevention Month
  • Mental Health Month
  • National High Blood Pressure Education Month
  • National Osteoporosis Awareness and Prevention Month
  • Preeclampsia Awareness Month
  • Inflammatory Bowel Disease: Chrons & Ulcerative Colitis.
  • Fibromyalgia
  • Ehlers-Danlos syndrome

I currently have a diagnosis of the following just from this list: Lupus, Ulcerative Colitis, Osteoporosis, Arthritis, and Asthma. In addition, I might have Autoimmune Hepatitis and Ehlers-Danlos Syndrome.

I always like to challenge everyone to learn one new thing in May about one illness. I am a strong believer in education others about chronic illness. I have encountered medical professionals who have been in need of education (I am not trying to be rude in any way). I have had people in the medical field ask me what’s Lupus? A basic understanding is helpful. Knowing just a little bit helps, even if you are not sick, for the day you encounter someone with an invisible illness.

I could go on all day on this topic, but I won’t as I am sure you have plenty on your to-do list today. Have an amazing day! Be sure to Like Chronically Hopeful on Facebook and subscribe to this blog! There will be a handful of guest bloggers which I am SO excited for!

A Mother’s Perspective: Chronic Illness

I am so excited for today’s post. We have a courageous mother of a daughter with several chronic illnesses. It has been an honor for me to speak with her briefly and to read a bit of their inspiring story. I hope you are encouraged. ~ Victoria

I am Kimberly, a full-time single mother, but more importantly mother of a teenager with chronic illnesses. EDS, POTS, MCAS.
Receiving a diagnosis is not a destination, but more so a journey.
Here is  a brief account of our journey to date:
It seems like yesterday on one hand and a lifetime on another. Three years ago during a rheumatology visit, unexpectedly during examination, the physician began piecing random dislocations, atrophic scars, fatigue, velvet skin, and overall illness into EDS. As he was identifying pieces, he stated this appears like Ehlers Danlos syndrome. I have worked in the medical field as therapist for 20 years and this was new to me. So like most, I instantly googled everything I could sitting there. I recall immediately being referred for blood work, Physical therapy, and cardiology that same day. Upon leaving his office I don’t think I will ever forget the look on his face. It was one of concern, sadness, and unknowing to me an awareness of a journey that was heading our way. As my daughter and I sat in cardiology she jokingly ask “so what do I have”? We proceed to laugh as she said EDS meaning explosive diarrhea syndrome. We laughed and I knew whatever it was we were going to conquer it.
As time progressed with additional falls and dislocations therapy ensued. It suddenly appeared dizziness and nausea were occurring. New referral and now POTS (Postural orthostatic tachycardia syndrome) diagnosis added.

Ok, but now what about these strange rashes. Well, that lead to MCAS(Mast cell activation syndrome). A few other diagnosis came along being eosinophilic colitis and pineal brain cyst through testing. Most recently TMJ and cervical compression issues also noted.  If you have been through the diagnosis process you know it’s not so easy as picking up the phone and immediately obtaining a physician appointment. Some list were 3-6 months long with genetics 1 year. Then you add follow-up visits for a wide range of disciplines. It’s overwhelming and difficult to manage a ‘normal life’ whatever that even was.

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In gaining awareness of these disorders and living it daily I have found a new appreciation for anyone experiencing these. I have seen the suffering from physical pain, fatigue, and mental components from anxiety/depression that a teenager should not have to deal with it. Being a teen is hard enough, let alone adding a chronic illness. Yes, it’s a struggle. Do I still feel we  will conquer this….. no. We have accepted at this time there is no cure. We manage symptoms. Do I feel deflated…. yes. As a mother, I like most want to fix my children’s problem. I have found that being supportive and her biggest fan is the best I can do right now. I have listened to her requests to give her more control when she declines testing. I get it when she says “why should I it doesn’t change or fix anything”.
I want others to know it’s challenging as a parent, but it will be ok. You have to be prepared for sudden ER trips that will change your family plans, hoping that loud sound wasn’t a fall or passing out again, keeping a watchful eye for strange rashes, preparing for school IEP meetings, and wow what about that mediset. Goodness, the medications seriously is this all? Expecting a teenager to recall all these and learning to fill set herself…. What happened to driving, boyfriend, and social issues teenage parents have? They are still there, but different. Friends change, the real ones stay, but it does change. No one prepares you for this.
With all the losses you feel, I promise that if you embrace the journey and take the good with the bad it makes life better. I don’t know what the future holds, but I am hoping through advocacy and research more treatment options become available. I know joining a support group locally was one of the best things I did. Talking to people that have been where I am and offered supportive listening. I am forever grateful to them and blessed to have a wonderful family that help. Are there days when I’m mad… yes! I’m angry and scared. What happened to college based on interest, not physically accessible and near physicians in the area!
You as I have learned, having a chronic illness, is life alternating for everyone. I surely wish my daughter didn’t have it. However, she does and I intend to ride this journey with her and advocate to the best of my ability for her and others like her so that there is dignity, respect, and research to aid in hopes of a cure one day. This is my journey and hope for a final destination.
Chronically Hopefully,
Kimberly

Me And IBD

I am IBD Visible because I believe that awareness makes a difference. Education is key to living as healthy as possible. It is key to closing the gap between the healthy world and chronic illness world. Lastly, it is vital for those in the medical profession to gain a deeper understanding and compassion for us and strive for the best medical care. No matter how complex every person deserves the best medical care and to have manageable pain.

December 1st – 7th is Crohn’s & Colitis Awareness Week. The Chrons and Ulcerative Colitis Foundation says this overall about IBD: “Known collectively as inflammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis are painful, medically incurable diseases that attack the digestive system, causing abdominal pain, persistent diarrhea, rectal bleeding, fever, and weight loss. The effects of these diseases are largely invisible, which is why we need to make #IBDvisible!

Crohn’s disease may attack anywhere along the digestive tract, while ulcerative colitis inflames only the large intestine (colon). In addition to the impact on the GI tract, in some patients, IBD may also affect the joints, skin, bones, kidneys, liver, and eyes.”

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The pain began at age nine. Growing up, I frequently had stomach viruses. I had issues with being underweight, even though I was eating. I was told I was underweight because I was growing too quickly. The abdominal issues got worse about three years ago. I was unaware that I looked like a walking skeleton. In addition to the pain, I would have 15 -25 trips to the bathroom with diarrhea. I have encountered so many issues medically that it is a blur when some symptoms began. Eventually, I saw blood. It was a vicious cycle of medical testing and retesting. At one point in time, I swore I was done with the stomach stuff. Done seeing doctors. Done going through the tests.

Last April, I was in the I’m done state of mind when I encounter a huge flare. Of course, my mom brought me to the hospital. My liver enzymes were sky high. Despite the fact that I did not want to go through yet another colonoscopy one was ordered. I was positive for Ulcerative Colitis. The hospital doctors explained that they don’t see cases very often like mine. I have about five autoimmune diseases. I was in the hospital ten days. Despite their good efforts to avoid steroids, I ended up on a whopping 60 milligrams.

And so, the battle continued and continued to this day. I now have a gastro who I trust and like. One who listens, has compassion, trust me, and tells me everything I need to know. I struggle with eating daily. There is no set IBD diet. My current treatment plan consists of Prednisone, Balsalazide , and Remicade.

The journey with IBD is unique for everyone. If you are diagnosed with IBD I would like to encourage you to check out these links:Crohn’s and Colitis Foundation, Inflamed & Untamed, and Kelly Patricia.  CCFA has on its website: “We need to make IBD visible! Why be IBD visible? While IBD patients may look healthy internally they may be suffering. The toll IBD takes on the entire patient lies hidden underneath, significantly reducing public understanding of what IBD is and how it affects quality of life. YOU can change this by getting involved and sharing your stories, giving a face to these diseases.”

  • December 1: A focus on IBD advocacy.
  • December 2: The focus is how IBD is an invisible illness. The whole “but you don’t look sick,” thing.
  • December 3: The focus will be on pain.
  • December 4: The focus is on fatigue this day.
  • December 5: Mental health is the focus on this day.
  • December 6: Complications of IBD will be the focus of the day.
  • December 7: Community is the focus.

This week use the Twibbon to raise awareness. Share your story on social media. Use #IBDVisible. Share your story with the Crohn’s and Colitis Foundation linked above for a chance to be featured on the web page.

 

Dysautonomia Awareness

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October is slipping by fairly quickly because of school and pyelonephritis. I truly wish I had more time to devote to  Dysautonomia awareness month. Millions of people are affected by  Dysautonomia worldwide. Sadly, like with many illnesses, there is not enough research or enough treatment plans. “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about.” In addition, I strongly encourage you to take a look at this video from the Dysautonomia foundation.

POTS Awareness Video

The beginning of my POTS symptoms is unclear. I had adapted to my peculiar symptoms. Then I landed in the cardiac unit from an allergic reaction to Reclast about two years ago. My nurse had woke me up a handful of times because of tachycardia. Then I overheard some medical professionals discussing my case and mentioned that I might have POTS. Of course, I did the tilt table a few weeks later with extremely positive results.

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POTS impacts my life daily. Some daily symptoms include Tachycardia , low blood pressure, dizzy spells, not absorbing things properly, brain fog, fatigue, and dehydration. In addition, I collapse, shake, and pass out. Currently, my treatment plan isn’t excellent. My doctor refuses to order saline. My only POTS specific medication is tachycardia medication. I do not have additional treatment options at this point in time due to my overlapping illnesses and treatment plan overall.

Accommodating myself is a challenge, to say the least. Hydration is a struggle, especially due to the fact that I cannot absorb fluids properly at times with Ulcerative Colitis.  Gatorade, water, tea, and drip drop are some ways I attempt to fight dehydration at home. At times, my cats can sense when I am going to pass out or have a POTS flare. In addition, I do minor diet modifications. Compression stockings are a must, though I wish they helped a bit more. Whenever I go food shopping I use a wheelchair.  If I am on my feet I clench the muscles in my legs and back to assist blood flow. I never lock my legs. I elevate my legs frequently as well.

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Education of POTS is lacking majorly in the medical field. I recently came a crossed a doctor that believed that POTS is purely a psychiatric disorder. Needless to say, I was irritated with the conversation. POTS is a health condition. It is complex. There are no cookie cutter patients. New research suggests that it might be an autoimmune disorder.

The Foundation page has some excellent resources for living with POTS. I hope you learned something from this post! If you live with Dysautonomia share what type and how it impacts your life in the comments. Lastly, if you aren’t in a support group find one. There are a wealth of in-person as well as online support groups.

This Is Chronic Illness

How the melody began of the symphony “the Spoonie Life” is unique to each of us. However, like a ton of bricks, the news crushed us emotionally, which no preparation could brace us for the sudden shift in song. Lumped into a group of over 125 million American’s who are in daily combat with their bodies due to chronic illness. After all, these are Invisible Illnesses.

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Adjusting to the new role. A list of things we can no longer do. Harsh comments as well as the stairs, seem to greet us everywhere. Friendships fade away. Symptoms and pain consume each day. Functioning seems nearly impossible. Daily medications. Frequent breaks. This is chronic illness.

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Well-meaning doctors increase anxiety levels. Medical testing is never ending.  No one seems to know what to do. At times our health is out of control and all we can do is ride the roller coaster and pray. Help seems just out of reach. This is chronic illness.

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Yet we cling to hope because our lives depend on it. Dreaming. We find that reason to keep fighting. This is chronic illness.

This week is Invisible Illness Awareness Week. A week to honor you and to give you a voice. To equip you to fight your battle a little better. Making the invisible visible. Making those around us more aware. Hopefully, others will understand the reality of chronic illness.

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My friend with an invisible illness, you are brave, diligent, and compassionate. You overcome  negativity.  You have battled your invisible illness gracefully. You are an inspiration. Don’t give up! You are beautiful. You have an amazing purpose and you are making a difference.