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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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New migraine precursor possibly

I’ll let you know tomorrow if my hunch is right. The last two migraines were preceded by an enormous burst of energy that lead to very late night cleaning/organizing.

Tonight I was so addicted to updating my blog that I just kept going and all of the sudden it was 12:40 am. My time stamp for this post will be around 2:45 am. In between the blog and going to bed I organized all of my Migraine Cave snacks, I moved furniture and put the new furniture in place. It fits perfect! And I put the microwave and snacks in place. Hence the crazy burst of energy.

I hope I am wrong about this hunch because I could really use at least one more good day before I need to use my Migraine Cave. I still have to pick up the mini fridge I found today for $30. Very excited to get that in place.

I had a very productive day so if I do go down tomorrow at least I am prepared with food and water!!

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My Migraine Toolbox

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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.