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New Migraine

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

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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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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Vacation with Migraine

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I took a nice long break from my blog while I was on vacation in Florida.  Mostly because the beginning of the vacation was dealing with head pain and migraines and fatigue that I never got on my computer and the second half of the vacation was spent keeping my little man, Gideon, comfortable because he became sick on Tuesday (the day I finally got medicine that would allow me to have more energy and less head pain, prednisone).  All in all we did make lots and lots of fun memories and have so many pictures of course that I am sure we will look back on this vacation with many happy memories.

Then we got home late Sunday night got the car unloaded, unwound and went to bed.  Monday I spent the entire day in the ER with Gideon…luckily his fever broke and he is doing much better, but he has been home with me all week.  Now it is looking like both boys will be home tomorrow and maybe Friday for a snow day.  Guess I am going to have to wait until next week to truly unwind.

The one thing I have to say about vacation with migraine is not as I expected.  I think I was expecting to go on vacation and everything would be great…a vacation from migraine because I said so…but it was not so.  So “My Family’s New Normal” keeps taking shape.  Everything was so much better when I fought to get a script for prednisone though…I was finally able to have the vacation from migraine and life 🙂  It was also very well timed so that I could take care of Gideon as well.

In the days to come I will write a few posts about my vacation and post a few pics!  But I am looking forward to having things wind down here at home.  Unfortunately with a winter storm comes more head pain.  Migraine started as soon as I awoke this morning.  Might be a long rest of the week and weekend!

That’s all for now folks!

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Imitrex…Side Effects

1/28/16 I HATE IMITREX!  The side effects are so awful that I just don’t like to take it. My heart begins to race, my chest tightens, my throat constricts making it t difficult to breath. HOWEVER, it seems to be the drug that actually helps knock down the migraine that occurs over my right eye, the classic migraine that I fight often. I’m not sure how long the good effects last because I am starting to feel it creep back up, but it’s something.   BUT DID I TELL YOU THAT I HATE IMITREX. Why does the medication that causes the most terrible side effects have to be the one that may help with the migraine. Ugh!  But I am thankful that there are a few options out there now to treat the different types of migraines that I suffer from.  Some people don’t even have that, so I shouldn’t be complaining.  When I looked up my side effects though, it says to discontinue and to seek immediate medical help because the medication also has the side effect of heart problems that can be masked by the side effects I am having, so I would have no idea if I was in real trouble.

So in the mean time I will take Imitrex if I feel a classic migraine coming on.  Prednisone will be reserved for long trips or very important events for the time being and Toradol and Robaxon work well to manage the tension migraines and New Daily persistent Headaches.  I feel like I am gaining a little bit of control over this demon, but am a long ways from finding the medication that prevents the migraines/head pain/headaches from happening.  One step at a time.  I go back to MHNI next Tuesday to work on a new plan of attack.  I have ideas and am learning so much about my migraines and patterns through writing this blog, that I feel like I am finally putting the pieces of a puzzle together.  And though it is far from complete at least the outside edges are getting closer to being done.

All I know is that because of Imitrex I was able to pick up my son from school when he called saying that his thumb really hurt, run errands and take him to the Dr. in E. Lansing yesterday and this is all after waking with a migraine and not being sure if I would make it out of bed.

I am glad we were able to get in to Josiah’s Dr. yesterday though because the splint they put him in at the Emergency Room was really cutting off the circulation and causing a great deal of swelling even after we had already loosened it.  They also determined that the fracture that the ER dr. saw wasn’t really a fracture.  But because of the bruising and the areas the hand and thumb are sensitive, they said he likely sprained it pretty bad.  We go back in 2 weeks to find out how he is feeling, but for now he loves his new Spiderman boot splint in his favorite color!!  It is pretty cool if I might say so myself.  He can take it off to take a bath, but for now he keeps it on all the time.  When you just look at the splint it looks like any other, but it is actually hard and formed to his hand just like a cast, but this one can be removed.  He was happy and the swelling went down rather quickly.  So hopefully the pain will go down too 🙂

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Postdrome and the ER again

1/24/16 Sunday was a day of feeling nauseous, feeling groggy and just an overall day of feeling gross.  Head pain was dull all day, but that’s because it was overshadowed by everything else.  I couldn’t sleep the night before due to feeling so well from the shot of Nubain.  So that didn’t help.  Trying to get myself re-hydrated and eating again was my main goal of the day.  And then to get some sleep.  I went to bed at 10:30 pm.

1/25/16 I woke today feeling refreshed was a wonderful way to wake up, since I had woken with severe head pain for the previous week.  I had a couple of hours this morning when I felt relatively good, but then fatigue came on quickly so I decided to take a nap.  But before my nap I decided to turn the vibrate on my phone off, so that when I have it in silent mode it doesn’t vibrate either.  Of all days to do this!  I got 4 phone calls that I really should have gotten.

The calls were about Josiah…he had injured his thumb and needed to go the ER.  Luckily Dan answered the phone.  And then he had the brilliant idea of using “Find my iPhone” which makes a sound no matter what setting you have it on.  Which finally woke me up and heading in to the ER to find out what the verdict was on Josiah’s thumb.  Broken!  My boys…just can’t keep themselves safe!

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4 days on 2days off 8 days on 3 days off 4 days and counting on

The month of January:

Jan. 1-4: Non functional with mind stabbing pain over my right eye…pain of the worst kind .

Jan. 5-6: Baseline head pain but functional enough to run a few errands

Jan. 7-15: Three days of tension migraine (at debilitating levels), 2 days classic migraine, 3 days both tension and classic migraine (very debilitating): finally did a migraine cocktail which happened to finally break the migraine cycle.

Jan. 16-18: Lots of energy, very low head pain, got a lot done (at least on my blog and on FB).

Jan. 18-23: Classic migraine (the mind numbing, stabbing pain over my right eye).  Finally went to the ER for a shot of Nubain and finally have some relief.

So if you do the math in the last 23 days I have had 5 days of mild head pain when I was functioning.  It takes a lot out of a person having so many days of head pain in a month.  Migraines sure are a bitch.  This most current migraine has kept me in my cave for four days.  I didn’t even see anyone for two full days. Thankfully I stocked my Crave Cave because it was the only food and water I had. I felt like I didn’t exist and I was in extreme pain.  This helps show a little bit how I felt. No shower for days. No brushing teeth for days. Pain for days.  Over and over and over again.   I go to MHNI on Feb. 2nd and plan on really pushing them for something…even if it means being admitted to the hospital again.

Pretty sure I could use this for a mug shot…orange shirt and everything…but my hair actually looks better that it really was 😉 ha!  Which reminds me I need to make an appointment to get my hair and nails done soon!!

Sleep Schedule

Even though this doesn’t have much to do with this post, it is something that I have been wanted to write about.  This is very different from other Migraine sufferers I know, but I am also on several medications that keep me pretty sedated: Klonopin, Trazadone, Robaxon, and Prozac.  But the debilitation is just as real…I am just sleeping for most of the time.  I feel so bad for other sufferers that I know that cannot sleep during their migraines.

Sleep schedule during a migraine:  To bed at 12:30am, wake at 1:30 pm, nap from 2:30-4:30 pm, nap from 5:30-7:00 pm and back in bed by 12:30.

Sleep during Migraine Hangover: Usually pretty exhausted but will often be awake most of the day, just sitting on the couch watching TV.

Sleep schedule during baseline or low head pain day: To bed around 2:30-3:00, wake anywhere from 7:30 am to noon depending on the day, but I often get up and get going to get things done.  I rarely nap on these days and stay up late again.  Someday when I have only had 4 hours of sleep I will take an afternoon nap, but my energy level is so high that I can’t really sleep, so I just keep on going.

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