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MHNI #14

March 31st, 2016: I remained at baseline NDPH all day which was a great relief compared to the days leading up to this visit.  I took an Amerge just to make sure that a migraine didn’t decide to join or that the NDPH didn’t increase.

I had such a great day.  My friend Dawn rode down with me and we talked all the way.  I drove and I talked and my head pain did not increase…it was wonderful.  I even drove home and talked on the phone for a good majority of the trip home since Dawn had food coma and I was trying to prevent going into food coma 😉

I was really worried about my appointments today because I had to tell them about Mayo Clinic, but it turns out they already knew because they all had to sign off on the records to go to Mayo.  They were very supportive and were anxious to hear any findings from Mayo.  What a relief!  And anxiety for no reason.  Oh well, I just didn’t want them to think I was going behind their back…I really just wanted to have someone look further into what might be causing the constant head pain.  Almost 15 months now!  Never how I imagined it would be, but have done my best to take it in stride.  So glad that my Dr’s at MHNI had my back about going to Mayo Clinic.  I leave in 5 days.

In between Dr. apts Dawn and I went shopping to 5 Below….great store, but you really have to limit yourself or you could spend way to much money without even knowing it.  And then we were going to meet up with my high school friends Kristen and Steve and their son Eli.  Unfortunately they were delayed and we only got to give hugs, say Hi and good-bye.  But the food at Olive Garden was awesome.  I hadn’t been there in so long.

Oh and I stayed awake all day!!!  Big deal for me really!  Thanks for making the trip with me Dawn…it was much needed girl time!

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SSDI Awarded

I was told that it would take at least more than once to apply for social security disability insurance, so when I received the letter awarding me SSDI today, I was so very grateful.  I still have long term disability that will run through December of this year (at least the balance of what I was already getting minus SSDI).  Very relieved and I won’t have to submit anymore paper work until December for review.  So for that it was a good day!

On the flip side, the migraine side, the daily life side; my New Daily Persistent Headaches have been really bad lately and very persistent.  So much so that walking through a store, using a computer, watching TV, talking or driving are major triggers.  And when the NDPH are bad, the worse the triggers cause an increase the head pain.  The constant pain in turn makes me very tired, so I sleep a lot (16 hours a day).  I think the meds I am on are also contributing, but the constant pain also contributes.  So the only reason I am writing a blog post is because I did a Toradol shot.

In addition tonight I had an allergic reaction to something in the house, something I ate??? I don’t really know what caused it this time and it was the itchy eye, congestion type of allergic reaction.  I took a Zyrtec, in addition to the Toradol and put a cold pack on my eyes.  Great combo 😛  But starting to feel better now.

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How can I forget so easily?

Even though I have found that prednisone works like a miracle drug for me and takes away my migraines and headaches for the number of days, the aftermath is not so much fun.  It is as if the week of freedom makes me completely forget about what it’s like to have migraines, what the symptoms are leading up to the migraine, what happens to me during the migraine and especially the day following the migraine.  This week came as if it was a complete surprise to me.  Every time I have gone on prednisone I have had a really bad week following, so should have known, but it was nowhere in my memory as I drudged through the week.IMG_7959

Luckily I had enough medication to get me through Monday, which was spent all day in the Pediatric ER at Sparrow.  8 hours of sitting, waiting, trying to make Gideon comfortable, dealing with fever, puking, pain.  It was a good reminder of what my friends and family have done for me over the past year.  And I was very thankful that my migraine had not returned yet.  But it was the last day of the prednisone…so now I just had to wait for the head pain and migraine to come again.
12742637_1745763652304281_8267423894534451792_nI didn’t have to wait long.  Tuesday morning I awoke with the beginnings of a migraine and the regular head pain had returned.  By the end of the day the migraine had kicked in full gear, so I took a triptan, which helped me get through the day…but I was woken up at various points in the night with the pain and then remained in bed all of Wed and Thurs. The pain was almost unbearable at times.  This happens when both the migraine and the new daily persistent headache are both competing for top spot on my pain scale.  I got a lot of use out of my IceKap and I even brought out the eye patch I bough in case it might help with the severe light sensitivity I get during the bad migraines.  I spent a good deal of time sleeping, but I also watched a good deal of NCIS on my right side with my right eye close and one ear plug in my left ear.  This minimized sound, brightness and business and allows me to block out the pain for periods of time.  This migraine also brought on a great deal of jaw pain and so I pulled out my bite guard…it was as if I had to pull everything out of my aresanol to deal with this big whopping migraine.

I had already decided I would take meds on Friday morning to help with the pain if it remained and it did.  So I took my migraine cocktail (Toradol, Zofran and Benedryl) and a triptan for good measure and went back to sleep for 4 more hours.  The rest of the day I thought I was feeling drugged and then remembered the postdrome symptoms and I was smack dab in the middle of them.  How could one week of relief make me forget how all of this works.

When I woke up Saturday (today) I felt great and I took Gideon to swim, went to CVS and to QD to get our after swim donuts (and milk and orange juice).  When I got home I asked if everyone wanted to go into town later because I was feeling great, but I just needed a nap).  Again how could I forget what 4 days of solitude, tucked away in my dark and quiet room does to me…It makes me fatigue easily and makes dealing with chaotic situations not so well.  But I had forgotten all of that and we headed into town.  After doing a return at Kohl’s and doing some shopping, I was whipped and couldn’t figure out why.  By the time we left the store I was so irritable because the boys were being boys (not even being bad, just noisy and busy: chaotic).  We had planned on going out to eat and just going inside the restaurant kicked up my anxiety a notch that when I came back to the car I had to put ear plugs in and ended up having to keep them in the entire evening.  By the time we were done eating, there was no way I was going to be able to go grocery shopping too.  How could I forget all of this during a one week of reprieve??  It is beyond me!  But thankfully I am on the flip side of that migraine and I will take it easy tomorrow in the hopes that it will keep another migraine from coming on so quickly as it tends to do these days.

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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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Several Good Days/Barometric Pressure

In a previous post I thought that the burst of energy might be a precursor to a migraine, because that seemed to have happened before the previous two migraines.  But this time it wasn’t the case. which is good news for me really.  I have had three days in a row with functional head pain and lots of energy.  In fact I was up until 4:30am last night and awake at 7:30am…no nap!!  This is a big deal.  I am a bit tired, but my head won’t calm down…I feel like the energizer bunny, hence the Migraine Cave being created in the matter of 3 days.

Things that have changed in the past 3 days:

  1. The new glasses: Theraspecs Website.  I have been wearing them at all times both inside and outside.
  2. I have stayed well hydrated (which was very helpful when I got a blood draw for allergy testing today).
  3. I have not spent all day in bed.  I have been out and about, visiting with friends, shopping, etc.  It has been a good 3 days.

I have also been watching the barometric pressure and feel spikes in my head pain when the pressure changes.  But so far it hasn’t gone into a full blown migraine or a debilitating NDPH.  There have been moments throughout all three days where the pain spikes for a half an hour or an hour here and there but I can almost always trace it to a drop in Barometric pressure.

A great article that my mom found about how Barometric can scientifically effect or trigger migraines.

Barometric Pressure in Relation to Migraines

My mom also found a great app for my phone that allows me to track 48 hours of Barometric pressure.  It is called Pressur but you can do a search for Barometric pressure and it should come up.  I paid the $1.98 to upgrade so that I do have the 48hrs.  The free one comes with a 12 graph.

  

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Migraine Hangover/Postdrome

The day following a severe or even a  mild migraine attack can be just as debilitating as the attack itself.

“The postdrome phase is the last phase of a migraine headache. It is usually preceded by the prodromal phase, the aura phase and the headache phase. The postdrome phase comes after the pain of a migraine has worn off. It leaves the individual with a feeling a little like a hangover.

People often don’t realize that the hangover is an official phase of a migraine, called the postdrome. Many migraine sufferers, especially women, do experience a postdrome after the headache, and it can last for around 24 hours.”

This is the period I am in now.  The fog!  And because I also suffer from NPDH, so I don’t get the full pain relief that others will feel.  Just hoping that a migraine doesn’t decide to take hold again tomorrow.  Sometimes that happens…back to back!  These times are the hardest on my family and on me of course. But I can always hope that I get a day or two of “relief” at least from migraine pain.

Oct 12th

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My Migraine Toolbox

toolbox

I suffer from three different types of headaches so there hasn’t been a day since January 21 of 2015 that I have had without head pain. However during that time I have kept a headache journal both for long-term disability reasons and because my doctors have asked too. I track my pain level at 4 points during the day, any abortive medications (like Toradol, Bendryl, Zofran, Robaxon) I have had to take to help with pain and what activities I was doing that day that may have contributed my head pain that day. This has been the most valuable part in creating my migraine tool box.

What is a Migraine Toolbox? It is being prepared for every type of head pain that could happen. It is knowing what medications will be beneficial and at what level of pain. It is researching what other migraneurs have in their toolbox.

My toolbox contains:
1. Preventative medications: I have tried so many and have had so many different reactions. My goal is to have that list of medications and reactions as part of my toolbox.

2. Abortive medications: these are for pain control in the midst of a headache/migraine and these too keep changing. I have tried many and very few work. But for now I have Toradol IM injections, Robaxon, Benedryl in pill form and Zofran for the nausea. I have also recently discovered Prednisone as the ultimate abortive medication but I can only take it sparingly.

3. Comfort items: it’s heat only for me so having microwaveable rice bags is very important. I often keep a crock pot in my bedroom for the worst days so I can simply rotate as needed. I also have an electric heating pad that is very helpful when I cannot get out of bed. I try to keep water at my bedside and am currently looking at putting a mini fridge in my room: see migraine cave. I also have ear plugs, my Theraspec glasses, injection supplies and a weeks worth of medication at my bedside. Oh yah and who could forget chocolate!!!

4. Creating a migraine cave: a place I can go that is dark, quiet and has everything I need when I have to hunker down for 72 hours. Currently I have sheets on my Windows but I want to replace them with Darkening blinds. Instead of the crock pot for heating rice bags I would like to get a mini microwave. I would also like to get a mini fridge so that I have a supply of water, ensure and other items that would keep in a fridge like cheese sticks etc. I have a fully functioning migraine cave but I would like a few upgrades.

5. Family and friends: on speed dial! For two reasons. I need to be able to call up someone when Dan has to take me to the hospital and know that someone on my list could watch the kids. But more importantly I need that family and friend list because they are my support system. They are who I call or text when I need support and they text or call me when they need support or just know that I do. I couldn’t have made it through this last year without any of you.

So if you suffer from migraines or any other chronic illness a toolbox is important to build for yourself so that you are always prepared or at least as prepared as you can be. And a journal is the best way to figure out what you need in your toolbox. I have also found that I now have a better understanding of what’s coming. For example; Friday night I started to get very irritable and a small pain started over my right eye. I knew at that point that I was in for a 72 hr migraine which will be followed by postdrome ( migraine hangover) which has begun and will continue through tomorrow. Knowing this ahead of time allows me to cancel any apts/dates I have made, I know I can’t drive during those 72hrs so Dan will have to run any errands or drop off/pick up kids. I knew all of this Friday night, which gives me a little bit of an upper hand. It does not however change the course of the migraine it just helps me know what to expect.