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.

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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.

0

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!

6

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.

0

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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0

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.

4

My New Normal takes a Turn in the Road

1/31/16 The past few days have been quite a roller coaster.  And though this post is mostly about food intolerance, there is a possibility there is a link between my migraines and food sensitivities.

I had a migraine every day last week and by Thursday night I had run out of abortive medications and was still in migraine mode, only without anymore pain relievers.  So I used what I had in my migraine toolbox to help manage the pain the best I could: dark, quiet, my new IceKap and my iPad with an ear bud to minimize sound and distract my brain from the pain.

Thursday was also the day I picked up the results of my food sensitivities and intolerance.  My first response was “there is no way my mind can take this in with this kind of head pain and I am on my way to get my hair done”.  So I set it aside and mentioned a few brief things to Dan.  And then I went in my bedroom because my head was killing me and decided to compare my list of no-no foods to my stocked Crave Cave.  I can no longer eat any of them.  Then I came out to the cupboards and could find nothing that I could eat that didn’t have at least one ingredient from the list.  Then I started swearing, throwing things, crying…you name the emotion, I likely felt it except all the happy ones of course.

12651188_10153830137376897_9210018167551688087_nFriday sucked as much because I was still mad and now becoming very depressed because I didn’t know what to eat.  So I ate nothing for breakfast, a cheese stick for lunch and a tortilla for dinner.  The worst part of the day though was that my migraine was not only awful, but the light sensitivity was awful and it was extremely bright outside and I had to pick up the kids; Gideon from the bus stop, no big deal and then Josiah from school because Dan forgot about him and had to work late.  So the picture here is of me trying to drive with an awful migraine while trying to block the sun out of my right eye where I was already being stabbed from the inside.  But it really demonstrates how I really felt as well.

And now onto my main point of this entire blog post, the Food Intolerance/Food Sensitivity testing and what in the world I am going to do and eat for the foreseeable future.

Food Allergies: Here is the list of allergies that my family and I have been learning to live with since June of 2014.   Actual allergies measured by IgE enzyme may or may not show up on the food tolerance testing but a few did show up on both lists* (and this turned our families life upside down, but not begin to compare to the upheaval it will take in the coming months):

  1. Peanuts
  2. Almonds
  3. Walnuts*
  4. Pistachio*
  5. Coconut
  6. Avacado
  7. Cherry
  8. Melons*

 Severe intolerance: (which means these foods should be avoided for a minimum of 6 months):

  1. Anchovy (which I thought no big deal at first until I read that you find it in soy sauce and Worcestershire sauce and other fish sauces…possibly even Fish Oil supplements.
  2. Baker’s Yeast (which is in EVERYTHING, well just about anyway.  All breads of course, processed foods, crackers and many broths)
  3. Kale (which shouldn’t be a problem because I have not acquired a taste for it and we never buy it)
  4. Lentil Bean (something we enjoy making once in awhile in our house, but we can do without easy enough)
  5. Licorice (the flavor is found in a variety of candies, soft drinks, herbal teas and cough syrup)
  6. Portabello Mushrooms (Something I really like but we rarely ever buy them, so this shouldn’t be too hard to avoid)
  7. Zucchini squash (I do love zucchini bread and we finally found a way we love to cook it on the grill, but again, not really a hidden ingredient and it will just have to make it’s way off my to eat list.
  8. BHA (These are often added to foods to preserve fats and is found in butter, meats, cereals, chewing gum, baked goods, snack foods, dehydrated potatoes and beer.

Moderate Interolerance (which means these foods should be avoided for 3-6 months)

  1. Acorn squash
  2. Apricot
  3. Basil
  4. Bok Choy
  5. Cayenne Pepper
  6. Clove
  7. Fennel Seed
  8. High fructose corn syrup
  9. Green pea
  10. Honey
  11. Honey Dew melon
  12. Kelp
  13. Kidney bean
  14. Lima bean
  15. Mung bean
  16. Red Beet
  17. Safflower
  18. Scallions
  19. Watercress
  20. Citric Acid
  21. Green dye #3
  22. Acai Berry
  23. Glucosamine
  24. Goldenseal
  25. Grape seed Extract
  26. Huperzine
  27. Resveratrol
  28. Spirulina
  29. Ammonium Chloride
  30. Ampicillin (my doctors thought I might have a slight reaction to penicillin when I was young because I broke out in a rash, but I have had the z-pack since??)
  31. Piroxicam (not sure what medication this is?)

Mild Intolerance (which means these foods should be avoided)

  1. Black beans-so sad 😦
  2. Blueberry-my favorite fruit 😦
  3. Cannellini beans
  4. Cantaloupe
  5. Cauliflower
  6. Chia
  7. Chick pea (but I love humus)
  8. Chicory
  9. Chives
  10. Cinnamon
  11. Cocoa
  12. Cucumber
  13. Cumin
  14. Dandelion Leaf
  15. Date
  16. Egg Yolk
  17. Grape
  18. Guava
  19. Mango
  20. Mulberry
  21. Nutmeg
  22. Gluten free oat
  23. Paprika
  24. Peppermin
  25. Persimmon
  26. Pistachio
  27. Pomegranate
  28. Psyllium
  29. Radish
  30. Sesame
  31. Spearmint
  32. Sunflower
  33. Turnip
  34. Wakame seawee
  35. Walnut
  36. Yellow Squash
  37. Cane sugar
  38. Maple sugar
  39. Barley
  40. Malt
  41. Rye
  42. Spelt
  43. Wheat
  44. Gliadin
  45. Agave
  46. Ashwaganha (wah?)
  47. Barley Grass
  48. Chlorella
  49. Chondroitin
  50. Elderberry
  51. Essiac
  52. Goji Berry
  53. Milk Thistle
  54. Mullein Leaf
  55. Rooibos tea
  56. Benzoic Acid
  57. Brilliant Black
  58. Red #4 Carmine
  59. Red #40 Allura red
  60. Nickel Sulfate
  61. Aspirin
  62. Ibuprofen
  63. Aleve
  64. Neomysin
  65. Penisillamine
  66. Tetracycline
  67. Voltaren??

SO WHAT THE HELL AM I SUPPOSED TO EAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

They gave me a food rotation list, but I am still not sure how that works.  The test results came with a 30 minute call to a nutritionist that may be able to help me get on the right path.  And then they gave me the list of Foods to Avoid:

  1. Acorn squash
  2. Anchovy
  3. Apricot
  4. Baker’s Yeast
  5. Basil
  6. Bok Choy
  7. Cayenne Pepper
  8. Clove
  9. Fennel Seed
  10. High Fructose corn syrup, better known as Corn Syrup or Fructose
  11. Green pea
  12. Honey
  13. Honeydew melon
  14. Kale
  15. Kelp
  16. Kidney Bean
  17. Lentil Bean
  18. Licorice
  19. Lima Bean
  20. Mung Bean
  21. Portobello Mushroom
  22. Red Beet
  23. Safflower (oil and margarine, also in diet mayo and diet salad dressing)
  24. Scallions
  25. Watercress (a main ingredient in V8)
  26. Zucchini

So in the end I have no idea how I will even begin to manage this and it won’t come easily or quickly…but it sure might explain why my stomach or lower abdomen hurts to some extent daily.  And then I have flair ups that the doctors have always just deemed IBS (which I believe I do have symptoms of that as well, but still).  Part of me wishes that I never took this test, that I never knew the results because they make me angry and I feel like I can’t eat anything.  So I have had much grieving over the past few days and not eating.  Dan tried to pick up a few things at the store for me, but when you are only looking for a few of the issues, there seems to be 5 other ingredients that are on this list.  But he is trying.  He also made us steamed fresh broccoli, ham steaks (that had no indication of additives that I couldn’t have) and plain white rice with a little salt.)  And it felt good to know that there was a meal that I could possibly eat.  And to know that I have a spouse on my side (like he has been through it all).

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I go to my Head Pain doctors on Tuesday and I am going to ask him he thinks that it is worthwhile to test for Celiac Disease.  I read an article about the relation of having a food allergy to Baker’s Yeast and CD and though I have not been tested for the food allergy I at least have some basis to be tested.  Headaches, fatigue, acid reflux, etc are also symptoms of CD.  So it might not hurt to at least get tested at this point.