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A Lazy Saturday at Home

The only activity that happened all day was Gideon’s swim lesson.  We had a really good talk about listening to Mr. Marty and watching and listening.  He did really great today…so proud and so excited to watch him progress!

All three boys took turns playing a new computer game called: Slime Rancher.  They all enjoyed it, but since Josiah had watched 28 YouTube videos he knew the most about it.  Even Gideon caught on with Josiah’s guidance quite quickly.

We watched all three movies: Inside Out, Pixels and most of Jurassic World  Thanks to Redbox we got the third movie for $1.00 and then I signed up for the email so my next movie rental is free!

I spent the day blogging.  I hit my 100th blog post today and have posted from January through April 30th.  Starting on May next and I want to make sure I don’t forget to post the current days so I don’t have to go back and try to remember what happened or rely on my headache journal or FB.  I can kill two birds with one stone  with posting my update on my blog and being able to share it on FB!

Love, love, love this picture of Dan and Gideon!  We were all on our electronics and watching movies for almost the entire day.  But I especially love that Gideon is wearing his party shirt and his under wear 🙂  After our Anniversary celebration last night, he decided he was going to have a birthday party for himself and that I was to call Douglas, Chase, Lakelan and Alyssa.  I asked for their phone numbers which then turned into him learning my phone number for emergencies…but no party!  I don’t think he understood in the end still why we couldn’t just invite them over today.  Oh well!  We have a plan to get some parents to give us a call to have a play date 🙂

I am so glad that I took the migraine cocktail yesterday, both so I could have a good anniversary evening, but it also stopped the cycle of the migraine, so that I could enjoy my Saturday at home with my family.  And even though I stayed up until 4:30 am last night I was up by 9:00 am today and never took a nap…the true sign of a good day.   It was only in the last hour or so that my eyes started to be strained and I felt some tension taking hold at my temples, but then I remembered the alarm going off for my 3:00 pm for my scheduled muscle relaxer, turning it off and never getting up to take the med.  So I just took the Robaxon and did a little Ethyl Chloride spray just so I can finish up this post 🙂  Priorities!!!

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The reality of Life with Chronic_______

I have had 2 1/2 days without migraine pain since January 1st. So for 13 out of the past 15 days, this is what I look like…


I have showered 3 times in those 2 weeks, brushed my teeth a few time (brushing hair or teeth causes more pain than I am willing to allow on top of the migraine pain).  I change my underwear if I remember and never wear a bra.   This is my reality!!!  And the reality for many others who suffer from Chronic Illness.

But today is our 16th Wedding Anniversary and I was having nothing to do with it, I am so over the pain. So I called my doctor and asked if I could take the migraine cocktail at home even though I have used the meds as much as I should this week. He gave me the go ahead. After about a half an hour the pain is much reduced and I am determined to enjoy our night.

Me after the migraine cocktail….


And so now we can go celebrate. Plus all my boys brought me home a new plant. It should be a good evening!!


So off to Carrabbas we go!!

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A Dream during a Migraine

The nausea is so bad today that it even entered my dream. I was at some random persons, oh wait I remember now, it was at our first day care, Kim’ house (I ran into her at Walmart yesterday) learning a craft.  I told her right away that I have a migraine and that I am very nauseous. She just said I was probably dehydrated. Boy did I get pissed, but then realized it was probably true.

At some point we were in the corner of a room because that is where the glue guns were. I have no idea what we were making and none of it made any sense.

I felt so awful. Why in the world did I even go in the middle of a Migraine and why the hell didn’t I leave. Oh yah what were Dan and the boys doing there running around being crazy. I told Dan he was going to have to help but he took off with the boys. I was so confused about what was happening, about what page we were on and even about what she was saying. At different points I remember having to get up and stumbling around to find it at her house.   I was trying to refer her to my blog but I kept writing it wrong, adding words, forgetting words. Then the pencil would break, or the piece of paper would be too small to write it on with the crayon I found. I was absolutely beside myself. Nothing like having and anxiety attack during a migraine in your dream.

I woke up from my dream and realized that this is exactly how I was feeling today. I had been stumbling around earlier, having difficulty finding words and I was and still am so nauseous.  Dreams are so weird!  image

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My Current Diagnoses

  1. Chronic Classic Migraine

    The International Headache Society defines chronic migraine as more than fifteen headache days per month over a three month period of which more than eight are migrainous, in the absence of medication over use. Episodic migraine is the other migraine sub-type, which is defined as less than 15 headache days per month.

    These are the worst types of head pain that I have and are the most debilitating.  They last 72 hours followed by a day of postdrome and can be immediately followed by another migraine.  Sometimes I get 2-3 days between migraines (but those days are filled with NDPH, see below).  My Migraine Cave was created for these, because I cannot get out of bed and the pain behind my right eye, in general, forces me to close that eye for most of those 72 hours.  It makes it difficult to eat, drink, watch TV (so I tend to use my iPad because it has a much smaller screen and use an ear bud to make the sound more direct and in the ear opposite the migraine.  It is the Migraine that doesn’t allow me to work, make plans, leave the house very often, which game me the title to this blog: My Family’s New Normal.  We stay at home much more these days because even when I am feeling better, I am afraid the sound of restaraunts, movie theatres, anywhere with people really will trigger a migraine.  But luckily my family are homebodies by nature and they don’t complain much about this.  

  2. Tension Migraines

    • Affects both sides of your head
    • Cause mild to moderate pain
    • Cause pain that feels pressing or tightening, but not pulsating
    • Aren’t aggravated by routine physical activity

    Some people may have skull tenderness.

    I am just coming out of a really bad Tension migraine.  For me this tends to be brought on by both weather and any type of physical activity.  The severity can range from moderate to debilitating and can often piggy back a classic migraine.

  3. New daily persistent headache (NDPH)

    These headaches come on suddenly, usually in people without a headache history. They become constant within three days of your first headache. They have at least two of the following characteristics:

    • Usually affects both sides of your head
    • Cause pain that feels like pressing or tightening, but not pulsating
    • Cause mild to moderate pain
    • Aren’t aggravated by routine physical activity

For me this headache started two days after the anaphylaxis and treatment that occurred on January 21st, 2015.  This is the pain that I wake up every day with, and have done so since January 23rd.  I have a baseline level of pain that is moderate or a 3 on a 0-5 pain scale (pain that I can function with).  But sometimes the pain becomes more severe and widespread and turns into the Tension Migraine when the pressure becomes so severe that medication is needed to relieve the pressure or a trip to ER is needed. 

4.  Cervicalgia

Cervicalgia is neck pain that does not radiate outward to the upper extremities or shoulders. Its symptoms can be chronic or acute and can include neck stiffness, aching, tenderness, pain upon movement and headaches. It can be treated with application of ice when caused by an injury, heat when the pain is muscular in nature, temporary use of a cervical collar, anti-inflammatory medications and physical therapy. 

I have gone to physical therapy for this and will start again soon.  They help to work the stiffness out but I have to do the stretches at home to strengthen my neck muscles at the same time or the physical therapy only provides temporary relief. 

5. Temporomandibular joint (TMJ)

TMJ acts like a sliding hinge, connecting your jawbone to your skull. TMJ disorders can cause pain in your jaw joint and in the muscles that control jaw movement.The exact cause of a person’s TMJ disorder is often difficult to determine. Your pain may be due to a combination of problems, such as arthritis or jaw injury. Some people who have jaw pain also tend to clench or grind their teeth, but many people habitually clench their teeth and never develop TMJ disorders.In most cases, the pain and discomfort associated with TMJ disorders can be alleviated with self-managed care or nonsurgical treatments.

I have a bite guard that I wear every night and also try and remember to do my jaw stretches (which uses my thumb and forefinger to stretch my mouth and is very painful…I can also get similar results eating an apple, which forces me to open my mouth wider which seems to get easier the further into the apple I get.

 

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What is a Migraine, What are the 4 stages, My Experience

Definitions and Stage descriptions from the Mayo Clinic Website

What is a MIGRAINE

A migraine headache can cause intense throbbing or a pulsing sensation in one area of the head and is commonly accompanied by nausea, vomiting, and extreme sensitivity to light and sound.  Migraine attacks can cause significant pain for hours to days and be so severe that all you can think about is finding a dark, quiet place to lie down.  Some migraines are preceded or accompanied by sensory warning symptoms (aura), such as flashes of light, blind spots, or tingling in your arm or leg.  Medications can help reduce the frequency and severity of migraines. If treatment hasn’t worked for you in the past, talk to your doctor about trying a different migraine headache medication. The right medicines, combined with self-help remedies and lifestyle changes, may make a big difference.

Symptoms: migraine headaches often begin in childhood, adolescence or early adulthood. Migraines may progress through four stages, including prodrome, aura, headache and postdrome, though you may not experience all the stages.

Stages of a Migraine

1. Prodrome: One or two days before a migraine, you may notice subtle changes that signify an oncoming migraine, including:

  • Constipation
  • Depression
  • Food cravings
  • Hyperactivity
  • Irritability
  • Neck stiffness
  • Uncontrollable yawning

2. Aura: Aura may occur before or during migraine headaches. Auras are nervous system symptoms that are usually visual disturbances, such as flashes of light. Sometimes auras can also be touching sensations (sensory), movement (motor) or speech (verbal) disturbances. Most people experience migraine headaches without aura. Each of these symptoms usually begins gradually, builds up over several minutes, and then commonly lasts for 20 to 60 minutes. Examples of aura include:

  • Visual phenomena, such as seeing various shapes, bright spots or flashes of light
  • Vision loss
  • Pins and needles sensations in an arm or leg
  • Speech or language problems (aphasia)

Less commonly, an aura may be associated with limb weakness (hemiplegic migraine).

3. Attack: When untreated, a migraine usually lasts from four to 72 hours, but the frequency with which headaches occur varies from person to person. You may have migraines several times a month or much less often. During a migraine, you may experience the following symptoms:

  • Pain on one side or both sides of your head
  • Pain that has a pulsating, throbbing quality
  • Sensitivity to light, sounds and sometimes smells
  • Nausea and vomiting
  • Blurred vision
  • Lightheadedness, sometimes followed by fainting

4. Postdrome: The final phase, known as postdrome, occurs after a migraine attack. During this time you may feel drained and washed out, though some people report feeling mildly euphoric.

My Experience

Stage one (prodome): Symptoms that I have come to relate to an oncoming migraine include: Hyperactivity, Irritability, Neck stiffness and Uncontrollable yawning.  And now that I think about it I think that constipation  might also happen, but will have to track that maybe.  Any indicator that I need to prepare for a migraine are helpful for both my mental status and for my family.  It helps them prepare for the days ahead if I can tell them I believe a migraine is coming.

Stage two (Aura): I only experience the aura (flashing lights for me) once in a while and it is usually during a really bad migraine.

Stage three (Attack): My migraines last 72 hours and can occur as many as 20 days or more a month (making them chronic migraines).  In general I have stabbing pain behind my right eye brow…but sometimes can occur on my left or both sides at the same time.  During a migraine I always experience, sensitivity to light (photophobia), sensitivity to sound (phonophobia) and a crazy heightened sense of smell.  I often experience nausea (luckily I don’t have vomitting, blurred vision once in a while and lightheadedness.

April 11th

Stage four (postdrome): I am extremely fatigued but have very little head pain.  Although, because I also suffer from New Daily Persistant Headaches (see the next post), I usually have head pain across my forehead, but it tends to be mild.  I also feel a sense of heavy fog that effects me cognitively (or a mild case of aphasia: Aphasia is a condition that robs you of the ability to communicate. It can affect your ability to speak, write and understand language, both verbal and written.) ; for me I can’t find words, get right and left mixed up, use wrong words…have trouble communicating.  It can last a full 24 hours or just for a few hours in the morning before I really get up and around and moving.