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Day 5 of ongoing head pain

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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Weather and migraines don’t mix

This whole weather changing thing has got to stop. At least the drastic changes. I woke with a migraine so disabling that I could barely handle the pain. Dan took the kids to the bus stop and I went back to sleep only to wake up to excruciating pain. So I brought out my Arsenal of abortive meds and took them all. I took the one that has been working for migraine first but 30 minutes later nothing changed. Then I took benedryl to hopefully go back to sleep and waited and put my IceKap on but nothing was helping. I finally brought out the big guns: 2 doses of Toradol and I was relaxed enough to fall asleep in about 15 minutes and slept until now. The excruciating pain is definitely gone, PTL, I just feel groggy with moderate level pain which I am so grateful for. Hey at least I finished and filed my taxes last night; maybe that was the cause of the migraine 😜. And thankfully I had planned today as a day of rest. So I will continue to rest and pray that when the meds where off the migraine does not return.

Of course this migraine lasted 72 hours followed by a day of disabling fatigue and dull head pain.  The 2nd day I just tried to sleep as much as I could to deal with the pain, using medicine alternatives like the icekap and heated ricebags.  However by the 3rd day I couldn’t take it anymore, so I took abortive meds again. Fortunately the meds take the severe pain away but unfortunately they leave me very dysfunctional and sleeping most of the day, then I couldn’t sleep at night, so I slept most of the day today (migraine hangover day).  The past 3 weeks have looked exactly like this and I am just getting frustrated.  Yes, there are meds out there that take the pain away, but they don’t make me functional.  So I am starting to consider a 2nd opinion.

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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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Not posting for days can mean…..

2/10/2016

  1. That I have been completely down with Migraines and just can’t get to my computer to post anything

or

2. I have not had a single migraine and I have been busy doing things like laundry, packing for a trip, running errands and taking care of a sick kid.

Luckily for me and my family I had a nice long stretch without a migraine…6 whole days!  This was the longest stretch I have had without pain medication, nerve blocks, facet blocks, etc. and no migraine.  The daily head pain was there the entire time, but at a very low level and there were even periods of time where I didn’t even notice the headache.  I felt very fortunate that I was able to be with Gideon during his week off of school (even though my increase in meds made me incredible tired).  Luckily Gideon loves to just hang out and watch cartoons and YouTube videos.  If we weren’t running errands, we were hanging out in bed watching videos.  Gideon was finally feeling better by the end of the week and went back to school on Monday…I think we were both ready for that!  With the addition of Flexeril as a nightly preventative med and increasing my Robaxon (both muscle relaxers) I slept a lot this week.  But when I was awake, I had huge bursts of energy and was able to do laundry and pack bit by bit for our trip to FL.

My migraine free days came to an end last night.  And when it came to an end, it resulted in 0-5, full blown migraine in the matter of about 10 minutes.  The only triggers that I can think of was talking on the phone and computer time balancing my checkbook.  At any rate I went straight to bed. I woke up at 3:30 am and the migraine was still raging, but I didn’t want to take any medication if I could get back to sleep.  So I put my IceKap on with nice cool gel packs and was able to fall asleep, waking up on and off, for 2 more hours.  When I woke at 5:30 am I couldn’t handle the pain anymore, so I tried Imitrex first because I was suffering from both the classic migraine (stabbing pain over the eye) and the tension migraine (Pressure and swelling around my entire head).  Imitrex barely touched it, so after a half an hour, I changed out my gel packs for cool ones, and did my morning medications plus the migraine cocktail (Toradolx2, benedrylx2 and Robaxonx2 was already part of my morning meds).  An hour later, the migraine was completely gone and I was able to complete all of my tasks that I needed to accomplish today; safety recalls taken care of my van (and we got 2 bran new key fobs…so exciting), shopping and lunch with my friend Mindy and one of the longest oil changes ever, but at least the car is all set for the big trip tomorrow.

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And now that we are pretty much packed, with the exception of the last minute stuff, I could use lots of prayers as we travel 15 hours.  Just hoping and praying for low to no head pain…but I packed my arsenal of abortive meds if I do end up with one…so I feel prepared.  We pick the boys up after school and head straight out!  We are all pretty excited!!  Just a quick picture to leave you with from our last trip to Destin, Fl…such a beautiful place!  I can’t wait to go for a walk along the beach 😉

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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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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.