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SSDI Awarded

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

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

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.

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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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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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Do any Migraneurs out there experience Binge Eating?

When I am down with a migraine, it is likely that I stay in my room for at least 3 days and I sleep a lot.  I tend to eat very little and what I do eat is not very substantial…I tend to stick to water and oyster crackers, maybe a bar or two.  This usually lasts 72 hours and then I have a day of postdrome (migraine hangover) where I don’t eat much and am still in bed due to fatigue, dizziness, nausea.  So now I am at 4 days of eating very little.  At the end of the postdrome when I start feeling better, man am I hungry.  I could eat everything in my site and I generally due.  And then I have eaten so much that I feel sick.  No urge to throw up or anything…just a cycle that I have started to see happening.  Just curious if anyone else notices this trend.

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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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Pics from Florida

There were no pictures from the first four days of the trip because it took 2 days of driving and 2 days to recover from the drive and dealing with head pain.  I finally left the Condo on Sunday with phone in hand to start taking pics.  It was beautiful outside, which also meant it was very bright, but the fresh air was wonderful.

Josiah found a bunch of college kids that let him play along with their beach games.  He loved it and it gave me some time to just take in the beach.

Grandma and Grandpa take the boys over to learn how to play Horseshoes.  And just some hanging out at the condo.  I was able to get a prescription for prednisone so that I could also join in with everyone in the fun!

Going for a walk with the boys…down to the beach and around the condo’s.

Lots of beach fun!!!

Dan had such a great time flying his planes on the beach and I think the boys and Bob enjoyed it just as much.

And then we were off to the pool

Quite a full day!  I had lots of energy and the boys were having a blast.  Next up was Tennis lessons.

Wednesday was a day mixed with great fun mixed with a sick kiddo!  We went to the Gulfarium and about 20 minutes into the tour Gideon said he didn’t feel very well.  He was burning up and fell asleep on my lap.  He perked up a couple of times so he could see a few things.  Grandma and mom took turns staying with him while he rested.  The Gulfarium was awesome though…great shows!

We stayed at the Gulfarium just long enough to see the sites and see the dolphin show (which was worth waiting to see).  But then we went straight to CVS to buy a thermometer and motrin.  The poor kid was burning up.  The rest of the day was low key and Gideon slept for most of it.

After a long night and lots of meds every 4 hours and laying low on Thursday morning, he was ready for the pool.  We thought it couldn’t hurt, plus it would help with the fever.  So off we went to the pool.  Then Josiah had to go straight to his tennis lesson.  Gideon was definitely not up for a tennis lesson.

Gideon came back to the condo after swim and wanted to play a game so we brought out Zombie Dice…always a good time for all 3 generations.

The one thing I had wanted to do while in Florida this year was to capture sunset pictures and silhouettes, so I convinced everyone to come to the beach for some pictures.  And I’m so glad that they did.  So much fun and some great pics!

We had decided to take Gideon in to an Urgent Care because we have not been able to get his fever under control and he continued to run a fever over 102.  My IceKap was very helpful for him and he asked for it…so glad I could provide some comfort.  Urgent care was very helpful in one way…they were able to give us the proper dosage of Ibuprofen and Acetaminophen for his age and weight.  The Ibuprofen was the best at keeping the fever down, but it always jumped back up when he was due for more.  The Tylenol didn’t do much at all.

We knew he was sick because he kept falling asleep on our laps.  Luckily I was on prednisone and had the energy to keep up with his needs.

Our last night on the beach…after the correct dosage of Motrin, Gideon was up for the beach.  We drove down and when he was done, we were done.  But it was a beautiful last night on the beach and Dan had great success with his new plane and even got some applause from the people in the high towers 🙂

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See you next time Destin, Fl!

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Prescription Theraspecs

2/10/2016 I really love the Theraspec glasses, but I really hated having to wear two pair of glasses.  So I contacted Theraspecs and asked if I could return the “over the glasses” theraspecs and get prescription glasses made!  So I had to send in my indoor tinted glasses and use the outdoor ones for a little while which were very dark inside, but I only used them when I needed them.  At any rate, I finally got my prescription Theraspecs lenses inside my cheap ole frames from Zenni Optical.  And I love them!  It is so great to just have one pair of glasses to wear during the day and on cloudy days they are good for outside too.