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MHNI Visit #13

2/2/2016 Yesterday I had my follow up with my Dr’s at MHNI yesterday.

I woke with a full blown migraine. I took my morning meds and an IMITREX, put my IceKap on and slept for an hour. When I woke up I felt so much better, thank goodness, because I had no idea how I would make it through the day.  Gideon took all of his meds like a champion this morning (thank goodness). He had to go with us to the Dr. appointments because he couldn’t go to school, I couldn’t drive and we didn’t want to expose anyone else to his multiple illnesses.  So he got to hang out in the car with us for the day. He is all set with electronics, movies and his new little stuffed animal. Then as we went to all get in the car, we had locked our one and only set of keys in the car. Luckily Dan is a pretty handy guy and we still had a metal hanger. Car unlocked, and only 15 minutes late. Then I downed some ice tea (caffeine) to further help knock out the migraine.

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My neurologist changed the triptan I was on (Imitrex) to a triptan called Amerge for an abortive med for the classic migraine, hoping it will have less side effects.   We also discussed adding Flexeril to my preventative meds for NDPH. He had read an article that people with NDPH have had great success with Flexeril, so I will be starting that tomorrow.  We will see how it goes. It is a low dose so hopefully I won’t have to many side effects.  The last change to my meds is to increase my migraine preventative medication, Robaxon to its maximum dosage to see if I had any better luck at a higher dose.  At my next office visit if my migraines haven’t gotten any better, we will try a new preventative med.  I didn’t want to add a new medication before our vacation. If the increase in this med doesn’t work, we try another at another at my next appointment. The goal is to find a med that will break the cycle of the migraines and NDPH and prevent further head pain. I also now have the option to make an apt for nerve blocks in my temples as needed every 6 weeks which thus far has been a miracle block.  I get an entire week of pain free.

2/3/2016 Today Gideon and I had a whirlwind day.  Josiah had a delay in school, so we drove him to school, so Gideon and I went to CVS to return our late Red box movies..ugh, we have to stop doing that!  And then I realized I forgot my prescriptions…ugh again!  We did manage to get to the post office to resend for the 3rd time documents to SSDI…ugh why do they keep losing my paperwork.  We drove back home to get the prescriptions…ugh.  Went back to CVS and then headed to Eaton Rapids for lunch with Dawn at McDonalds…Gideon was so excited!  Then a follow up with his Dr.  He is still full of illness 😦  Double ear infection still, swollen glands, sinuses completely blocked up.  So she prescribed prednisone to help all of the swelling (Is it bad that I want to keep the prednisone for myself 😛 and no I gave the steroid to Gideon.  He is feeling better, but just the energy level!  The rest of his little body still hurts.

Once we got home I passed out with a migraine on my left side (very unusual for me, most of my migraines are on the right side).  Still have a mild migraine but a good day overall.

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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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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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