0

Roller Coaster Weeks of May

Week of May 9th: I was still on prednisone until Wednesday.  But I was exhausted every day.  Gideon ended up staying home with a fever Tuesday through Thursday and we pretty much laid around during that time.  My head pain may have been low, but my body was completely out of energy.  So we sat, watching TV, playing on our electronics, napping a lot, even Gideon.  Head pain actually remained low until Saturday, but finally on Wednesday, I got some energy back and so did Gideon, but was still running a low grade fever so I kept him home one more day.  We had a fun day of going to lunch, Walmart, lots of garage sales and then to Miss Tammy’s (his daycare before I lost my job).  Man was I whipped when I got home though.  Friday started my day with a sore throat and pain into the chest.  I was thinking it was a yeast infection from the prednisone especially because I had it down there and on a place on my stomach…so not fun.  I just felt crappy all day.  I tried to go into town, but only lasted an hour and then back to bed for me.  I woke Saturday with a migraine starting but didn’t let that get me down…at least with the help of Imitrex it didn’t get me down.  So we packed in the car and went to a few garage sales and had lunch out.  By Sunday I was completely exhausted and slept almost all day.  Migraine most of the day when I woke in spurts.  I did rally in the evening to get the kitchen cleaned, the boys to clean their bedrooms and bathrooms and organized the laundry to fold and hang…it was really beginning to pile up.

Week of May 16th: Monday in bed all day with a horrible migraine for which I finally had to take a Toradol shot just to take the edge off.  Tuesday I woke with the migraine, but took Amerge ( a Noratriptan that takes quite a while to take effect but works for a long time) and went back to bed until 1:30pm.  I got up showered and felt like I had some energy back again.  I was supposed to meet a friend for a late lunch/ice cream but that fell through, so I13265911_10154115930606897_534315005628657821_n went and ate at Taco Bell for a late lunch by myself.  I ran a few errands and hit Goodwill for a few amazing finds…Body Glove surf suit for Gideon $8 and it fits perfect, white leather Keds for $4 for me which is what I was looking for and a pair of garden shoes for $4 and I love them, they are bright green and make me happy 🙂 And then went crazy and folded all the laundry, hung up hanging clothes put it all away..and if that wasn’t enough I emptied out my entire closet to make room for all of  my clothes that not only fit but were some amazing garage sale finds and to make room for my new addiction: LulaRoe.

The rest of this week is a mystery to me really.  I woke up on Wednesday with a great deal of energy and very little head pain (1/2).  So I called my friend Mindy and we went to lunch and hung out all afternoon and chatted all day.  Then in the evening the family went to Josiah’s school for a walk-a-thon type thing and I walked 1 1/2 miles.  I was so scared…I knew I would end up with a migraine that night or the next morning, but the mystery is…I didn’t.

So Thursday I woke up feeling ready for the day and spent the entire afternoon with my friend Carrie, hitting garage sales and Meijer towards the end of the day.  Friday I went to Josiah’s field day at school for 3 hours which was so much fun and I am so glad I was able to go and participate in something this year with the schools.

Then went to ready care because a pain in my neck, possibly lymph nodes had been bothering me, he put me on antibiotics and sent me on my way. I slept until 3:30, visited with my parents and then we all headed in to Gideon’s school for his school Carnival. And again I was so pleased and excited that I got to participate in something with the kids for their school.

Little to no head pain all day and into the evening.  I did do a Toradol shot, but that is because my body was aching 🙂  Then my parents took the kids and Dan and I just hung out all weekend, hitting a few garage sales.  Saturday night we hung out with our friends Stephanie and Jared until 1:30 in the morning.  Still no head pain.  I was even wearing my regular glasses without the tint.

Same for Sunday…I did have a bad reaction to food, but other than that another great day.  It’s a mystery!  I was actually having feelings of guilt because I had gone so long without a migraine.  How weird is that?  I was also very confused…was this going to last, was the medicine working, I just didn’t know.

Week of May 23rd: Monday was another great day.  I spent most of the day relaxing at home though just in case.  But it was nice and quiet and had no responsibilities that day and that felt good..no where to go!  Then as I was on FB a notification came up from one of the virtual garage sale sites and I just happened to click on it.  It was a piece of property.  10 acres of land, with great hunting potential.  I contacted the owner and asked if we could take a look at the property.  So after we had all eaten, we headed out 14.5 miles from our house was this beautiful piece of land.  Oh my goodness, we were instantly in love.  Rolling hills, woods, the view, the potential to maybe build some day, photography potential.  So we walked all the way to the back of the property which was quite long.  When we got to the wooded area it was tough to walk because of all the prickers, so Josiah and I chose a different path and we ended up in the swamp.  It took all of my energy to get to the back of the property and then I was digging for extra energy to get back.  We saw 4 deer and a rabbit in our short time there.  The sun was setting and we were in love.  We didn’t really think about how we would pay for the land, just how beautiful it was and the potential it had.

13244057_10154130463246897_9192157925923215676_o13227292_10154130463256897_6246298232012644346_o

And then I had no more guilt, I knew the answer to the questions I was asking myself…the13241196_10154132262611897_3871821648081814738_n head pain returned and with a vengeance.  Ugh.  I went to bed with the pain rising and woke with the head pain at a 5.  I took an Imitrex and went back to bed because I had a hair apt later that day and of course I had to make it 🙂  By the time I 13233015_468205046703984_2698938692415491479_ngot home the meds were worn off and I was back to bed and in bed all day Wed and Thursday.  Friday, I woke with the migraine still, but took Amerge because I was done with the pain.  Luckily by 1:30 when I woke up the meds had done their job.  So I went in to town to see the back about financing the property (after chatting with Jennifer our realtor, she told us that there was a possibility of financing and I made some calls and found out that was indeed true).  I got all the information about getting pre approved for the loan and what it would take to get the loan.  20% down…ugh.  If we got the property for $32,000 with realtor fees we would need $7000 to put down.  No idea really how that could happen.  So I put that aside and started driving until I found a garage sale sign which lead me over towards the property.  I decided to go look at it again.  When I got out of the car, I felt this amazing peace.  So I decided to pray about this property and if it was to be in our future or not and to please make it clear 😉  One can always ask!  And wouldn’t you know it, when I left the property, 2 houses down there was a garage sale.  If you know me, or have at the very least read this thread, I love to garage sale.  It must be a sign, right?  🙂  hehe j/k  I won’t disregard it, but I won’t put an offer in based upon that “sign” 🙂  I picked up the kids from school (a treat since they have to ride the bus and walk home) and then picked up pizza.  My parents met us at the house and took the kids off for the weekend.  After they left, Dan and I sat out front and just enjoyed the peace and quiet and listened to the birds and talked about our day without interruption.  And then the guy next door started mowing…inside I go.  Allergies are kicking my butt this year.  So now to spend Memorial Day weekend however it takes us.  But I will gather all the necessary documents needed for the pre approval for sure.

 

Advertisements
0

Test Results

I keep forgetting to post the results from testing done at Mayo Clinic. They all came back normal. So still no answers but in the long run it’s good that I don’t have cancer in the brain or spine or any of the incurable autoimmune diseases. But it’s been pretty rough week with the weather patterns the way they’ve been. So I still keep trudging along taking each migraine as they come. Finally over a 72 hr migraine…abortive meds were not helpful throughout this one.  No changes yet with new meds because it will take 8 weeks to get to the target dose and then another 5-6 weeks to know whether or not it’s working. If it works AWESOME, if not I go back to Mayo in August.  I will start the prednisone break on June 10th so that I am able to be there for my 2 boys over at least two of the summer months.  We already have a week long trip to Florida in June and hopefully we will be able to do some camping during the break.  I am also aware of the possible risks of prednisone and one of them is Headache, so hopefully that doesn’t happen to me.  And increased acid reflux, so hopefully the meds I am on for reflux will continue to keep it under control.  The side effects long term will have to be dealt with in the long term.

So for now I deal with the side effects of Neurontin: fatigue (both mental and physical).  But hopefully as soon as I make it to the target dose and stay on it for a little while my body will adust.  More importantly I hope it works!

0

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.

2

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.

0

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.

0

1 year anniversary of the first day of my everlasting migraine/headache

1/23/16 It only seems fitting that I am back in the ER exactly one year from the day the migraine began. One year of so much craziness, so many Dr visits, so many missed events, so many….

But also I am thankful for new friends, thankful tha I now have an  understanding of Chronic illness and living with chronic illness. I am also very thankful for health insurance because even though out of pocket I pay $845 a month and max out of pocket of $3000 at least I didn’t have to pay the hospital/Doctor bills that added up to over $300,000 last year.  I am so thankful for the family and friends who have supported my family and myself over the past year.

On my way to the ER after battling a 112hr migraine.  I just couldn’t handle the pain anymore and decided it was time to go in.

Waiting for the doctor at the ER.  It was one of the best ER visits that I have had in regards to a migraine.  She looked back at my chart and saw that Nubain was an effective narcotic for when the migraine cycle couldn’t be broken with Toradol, Benedryl and Robaxon.  I also told her that starting an IV was extremely difficult and if I could avoid it, that would be great.

Thankfully she really listened to me and did not insist on starting an IV or taking blood.  Instead she offered me a Nubain shot and when that took effect I was able to go home feeling so much better.  This is a picture of me after the shot of Nubain, kind of a goofy grin, but that is exactly how I was feeling 🙂

Me waiting for my family because they didn’t get any of my texts.  And although I am slightly annoyed I am so thankful for the relief.

0

An Update

Starting with the positives. The neurologist did the nerve block again and again with success. And although temporary it means that I not only have some headache free days over the next week as along as I don’t push it, but it also means that I am a good candidate for the radio frequency nerve ablation, where they basically kill the nerve that is giving me such terrible headaches. I meet with the Pain Specialist next Monday for a consult and will hopefully get that scheduled, however they are scheduling 6-8 weeks out. This will be a more permanent solution whereas the nerve blocks at most last a week.

They are also checking with my insurance company about Botox injections to see if they are covered. The neurologist is hoping that ablation in combination with the Botox and medication (of which I am now only on one called Lyrica) should treat all three headaches that I have going on at any given time.

The physical therapist also gave me a script for a tens unit to help between now and when all of the above have been completed and take affect. I am also going to physical therapy and for the first time in a long time the majority of the tension in my neck is relieved. So that is wonderful.

My next apt with the neurologist is June 10th and so my return to work date is June 10th. My FMLA runs out May 25th, so I am not sure what that will mean for my job. Trying pretty hard to put this all in God’s hands because it is truly out of my control. I really would hate to lose that job, it was one of the best jobs I have had and it was such a great company to work for, but at this point there is no way I could possibly work. When all 3 headaches decide to be present I am down for about 3 days, in bed all day. And although I am learning some of the triggers and can try to avoid them, talking is one of my biggest triggers as well as bending over or looking down, chin to chest. I have also found that using my arms out in front of me quite quickly brings on at least one of the headaches.

So again I say this is all in God’s hands at this point and I have to rely fully on him.

March 3rd