Monthly Archives: March 2016

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MHNI #14

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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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Easter Wednesday

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Easter Sunday: Parent Fail due to Migraine: The kids have no idea it is Easter and that is ok because I was never able to get to the store to get any Easter basket stuff. I feel so terribly guilty, but luckily I was blessed with children who simply go with the flow and are not very aware of time. Maybe next week will be better and I can get to the store and hit the clearance sales so we can celebrate next Saturday or Sunday. I figure as long as we go over the real Easter Story that is the main point and it doesn’t matter when we do that. But the guilt will remain. And back to bed I go. This round of migraines/headaches has been really awful and I even have a new one that I have not experienced before. And to top it off it does not seem to be responding the medications that I have on hand. But I have taken all the meds in combo and am hoping for some lowered pain time to spend with my family later on today.

Wednesday, March 30th: I finally felt up to being human today.  So I went shopping and got lots of after holiday sales on Easter candy and stuff. It was a lot of fun getting their baskets together. Filling the eggs and then hiding them. It was as if the timing couldn’t have been more perfect. We even had sun and it was really nice out. The rain held out and the boys had a great time. So glad that I was able to provide “Easter” at least the secular version to them! Next up is the read the real Easter story.

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New Migraine

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March 26th I am guessing that this drastic change in barometric pressure could be why I have been down for two days. Such terrible pain and meds are not working. A 0.1 change can result in migraine. This shows a change of 0.66.  And the pain is new.  It feels like someone has their hand at the base of my skull and their fingers are like tentacles of pain radiating up and over my head to my forehead.  The majority of the pain begins in my neck on my left side, at the top of my head where it is sensitive to the touch and has stabbing pains and behind my left eye.

March 28th: Today is my 5th day in row down with the same migraine. Meds so far haven’t helped. This seems to be different than previous migraines/head pain. I am hearing from others that they are also suffering right now. I just wish the weather would stabilize. I have no other explanation than that. At some point I am going to have to go to the ER but it is so damn inconvenient. So if anyone has no plans or kids to take care of who wants to hang out at Sparrow, let me know!

March 29th: Finally decided to go in to the ER. My speech was getting increasingly more slurred and I was having trouble finding words words. 6 days straight does not do a body good when it comes to migraine.

I have to admit that the service at Sparrow ER was pretty amazing, fast and very smooth.  I got there and got my bracelet.  I immediately went to the next person to tell them why I was there, and was called directly to give a more detailed account of what was going on and at that point I met with an ER physician where they came up with a plan.  From there I went on to get my blood drawn and urine sample.  Before I could even finish filling out the sticker I was taken to a room.  Within minutes a nurse was there getting an IV started.  It was nuts!  And awesome!  They tried the migraine cocktail (Toradol, Benedryl and Zofran) which didn’t do anything.  Then they tried Haldol and pepsid.  Haldol is a drug that I need to put on my “never take this drug again” list.  I felt like I wanted to crawl out of my skin and then passed out.  Still no relief.  After a consultation with a hospitalist to determine whether to admit me or try a Nubain shot and they went with Nubain and it worked like it always works.  I am heading home with a prednisone pack (which I plan on saving for a trip where I could really use it.  In fact I have felt pretty good since that ER visit and really didn’t need the prednisone pack.

1:30am Home again home again!! I feel so much better. Hoping that I wake feeling refreshed a little bit anyway. The boys did great. He took them home and put them to bed at regular bed time. Then when I called he woke the boys long enough to get to the car and went right back to sleep. Kids are so great like that!! Thanks for the prayers.

 

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New Migraine leads to ER Visit

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I will look back at this and one day laugh…in fact all I can do is laugh about it now.  I have already written this post, but had completely forgotten about it.  I spent about a half an hour putting it together….and it was already put together.  Ugh Oh well!  Maybe some of you didn’t see the first post about the New Migraine 😛

The new migraine involves the left side of my neck where there is a great deal of muscle spasming.  On the back of my neck, it feels like a hand is being placed at the base of my skull and the fingers are tenticles of pressure that engulf my head before finding their target behind my left eye where it feels like a dagger.  It may sound dramatic, but this is the pain I felt for 6 days and on the 6th day my classic migraine behind my right eye joined the party.

March 26th: I am guessing that this drastic change in barometric pressure could be why I have been 6898_10153978454741897_7694716924008176830_n (1)down for two days. Such terrible pain and meds are not working. A 0.1 change can result in migraine. This shows a change of 0.66.

March 27th: Parent Fail due to Migraine #126: The kids have no idea it is Easter and that is ok because I was never able to get to the store to get any Easter basket stuff. I feel so terribly guilty, but luckily I was blessed with children who simply go with the flow and are not very aware of time. Maybe next week will be better and I can get to the store and hit the clearance sales so we can celebrate next Saturday or Sunday. I figure as long as we go over the real Easter Story that is the main point and it doesn’t matter when we do that. But the guilt will remain. And back to bed I go. This round of migraines/headaches has been really awful and I even have a new one that I have not experienced before. And to top it off it does not seem to be responding the medications that I have on hand. But I have taken all the meds in combo and am hoping for some lowered pain time to spend with my family later on today.

March 28th: Today is my 5th day in row down with the same migraine. Meds so far haven’t helped. This seems to be different than previous migraines/head pain. I am hearing from others that they are also suffering right now. I just wish the weather would stabilize. I have no other map_tileexplanation than that. At some point I am going to have to go to the ER but it is so damn inconvenient. So if anyone has no plans or kids to take care of who wants to hang out at Sparrow, let me know?

March 29th: I finally decided to go to the ER. My speech was getting increasingly more slurred forgetting words. 6 days straight does not do a body good when it comes to migraine.

Their new triage system is quite nice and efficient.  I never sat down from the moment I walked through the metal detector until I was in a room getting ready to be hooked up to an IV.  I got my wrist band, talked to the first person to tell briefly why I was there, then off to explain further and make sure all of my info and medications were up to date in their system.  In that same room I met with a triage Dr. where she came up with a plan which was put into the system.  I then went to get my blood drawn and give a urine sample.  I didn’t even have time to put my name on the sticker and they were whisking me to my room where a nurse came in quickly and started the IV.  My veins don’t like to cooperate, but today the woman drawing my blood got it on first try and the woman putting the IV in only took two tries.

The first round of meds is the migraine cocktail and for me that is generally; Toradol, Benedryl and Zofran.  It didn’t work of course (I had already tried that at home, but they have to try).  Then they came back with Haldol (which made me want to crawl out of my skin, it was terrible) and Pepcid.  It finally knocked me out but the migraine remained ever so present when I awoke.  They were debating on admitting me at that point, but after a consultation from the hospitalist on call they decided to try Nubain and guess what it worked.  I has yet to fail me in these terrible, long term migraine cycles.  They let me lay for quite a while and once the narcotic effects wore off the migraine was gone.

Dan had taken the kids home earlier in the evening because each one of these medicine cycles takes time to take effect.  So I called him at 1:00 am and gathered up the kids and came and picked me up.  I love that my kids are so malleable…they just go with the flow no matter the situation (well most of the time anyway.

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P.s. 

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I stayed awake long enough to have a good start on my packing list. Once I got it in my head I couldn’t go to bed without at least starting the list and formatting the table of course!  I know I have made a few geeks out there proud! Haha. 

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Caffeine + Amerge = Wide awake @ 3:00am

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When I woke I had very little head pain…but I decided to have some ice tea with Caffeine so I can stay awake and enjoy the head pain, which meant that I started doing things (I did get a lot accomplished) and talking on the phone for this and that which meant that my head pain increased.  We had Gideon’s Parent/teacher conference tonight and I really wanted to go and enjoy it…he was so excited because it was lead by the students…way too cute and we got to see what he is learning.  So I decided to take an Amerge for the migraine that was brewing.  That in combination with the caffeine means that I am wide awake still at 2:45am.

I completed my entire timeline of Dr. apts and procedures done since Jan. of last year (I had already started, but I finished tonight).  I also completed my medication timeline.  A list of when the meds were prescribed, by whom, dosage and if they were effective and if I tolerated the med.  And then because I was still going strong I made a spreadsheet of my migraine journals that show how many migraine days I have had each month since this started and how many days I have had to take medication to help with the pain.

So in a nutshell I am still wide awake, but I still have very little head pain.   I wonder what other spreadsheets I could make, I do love spreadsheets and organizing 🙂  hehe!  I believe that the first thing I begin to do when I start feeling better with or without the aid of medication is to organize…the kitchen, file folders, make spreadsheets, write my blog to get my thoughts in order, laundry, cleaning.  Praying that this continues tomorrow because I still have not unpacked from our trip to Florida a month ago 😛  Don’t judge!  Most of the clothes are summer clothes anyway!

Now I will probably sleep all day tomorrow.  That’s the way it goes. Oh wait I need to start a list of things I need to take with me when I go to Mayo Clinic…and I will definitely need my HotHands Hand Warmers and gloves.

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SSDI Awarded

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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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Mayo Clinic

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I got the call that Mayo is going to take my case!!!  Happy Dance!  My series of appointments start on April 15th.  Good thing I already filed my taxes.  And a really good thing that my mom will be home from Florida and is available to drive out there with me.  Now to start filling out headache questionnaires and gathering all of my medical files.  Just hoping that they can get me some answers.   I have my next apt at MHNI on March 31st and I really hope that they will continue with me as a patient even though I am going to Mayo to try and get more answers about the why? the migraine started to begin with.  Hopefully they will do more extensive testing or having other ideas or who knows what!  But it can’t hurt at this point!  I am kind of excited about this journey.

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Day 5 of ongoing head pain

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The fun thing about having several different types of migraine is that when one isn’t rearing it’s head the other ones can join the game.  It has been a very long week and I used all of my abortive medications by Wednesday.  If I wake with a migraine tomorrow I will be taking something so that I can spend some time with my family.

The worst part about having a migraine that lasts so long is the sleep patterns get so messed up, I stay in my bedroom about 22 hours a day and I become really down and lonely.  I forced myself to come out of my bedroom tonight as much to be with my family but also so that I wouldn’t fall asleep at 6:00 like I have been doing lately.  But because I have a migraine I have put in ear plugs in order to deal with sounds.  The result taking that late nap is that I can’t get to sleep and when I have a migraine in the middle of the night and can’t sleep, this makes for a bad combo (as many migraine sufferers know all too well.  But I am always so tired.  So here I am posting on my blog.  I am also going to post my pictures from Florida tonight too.  This gives me a goal so that I am not as tempted to go in to bed and fall asleep 🙂

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2nd Opinion

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So I have decided to see if I can get further answers about my migraines.  Right now and for as long as I have been going to my current head pain clinic, they have only been trying to treat it.  But no one has ever tried to get to the bottom of the cause and looked at it from that angle.  So I am on the phone right now with Mayo Clinic in Minneapolis.  Jeremiah and​ Kelly​ and Karen,​ who knows you might be seeing me on your front steps.

I finished giving them all the information that they asked for and confirmed with my insurance that Mayo is in-network.  So now I wait until the neurologists review my case and call for more information.  They said it would a couple of weeks for anyone to get back with me and then I will know more about what their suggestion is from that point.

Until then I have an apt with MHNI on March 31st to see what they have to say again and which medications they will change.  What other ideas they might have and then hopefully I will have a better idea about when they might see me at Mayo Clinic.