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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.

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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.

 

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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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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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Theraspecs

After much deliberation, I decided to get a pair of glasses specifically designed for migraine sufferers. And I got them today 😀. I could have definitely used them over the passed 72 hours during one of the worst migraine I have had. Three days in bed will be fun to recover from.

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But I digress. I got glasses for indoor and outdoor. I had to buy the ones for over  prescription glasses so they are not cute and a bit bulky but I am hoping it will help with screen time specifically. But also to be in the living room with natural light as well.  I look forward to trying both the indoor and outdoor glasses. I am also curious to see if wearing them during my baseline New Daily Persistent Headaches (NDPH) will reduce eye pain.

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After Vacation…Back to Reality

As much fun as all my adventuring looked it took quite a toll. Compared to Canada where I had no worries, I didn’t over exert myself, I took naps everyday and all the relaxation resulted in hardly any head pain at all. The second part of our trip was a lot of fun but we did so much. The hikes looked fun but I had head pain at every turn. Sometimes severe! But I so badly just wanted to get away from head pain that I pushed and pushed and by Sat night I had hit a wall. I was down by 6:00, had no interest in dinner and slept fitfully through the night. The ride home was long but I stayed alert because that’s all I could do through the storms and driving at dusk through storm debris.

The drive took its toll but when I got home and came back to reality, I remembered all the bills piling up, the inspections on the old house to be done, the long term disability paperwork that came telling me that none of the Drs and hospitals had sent in any paperwork and short term disability ends in 4 days, the small claims suit from the old renters that needed clarifying with the court, prescriptions to be picked up and a $1000 prescription bill to get refunded because Cobra took so long I had to pay out of pocket, oh and Gideon had to register for preschool today which meant filling out all necessary paperwork and gathering all documents needed and then pick him up because I thought this was when they got to see the school and meet teachers but it was just all paperwork, and then I had to pick up milk and then get Josiah and come home to take a nap only to be interrupted by a phone call from my Drs office saying they reviewed my case and are extending my leave through the end of November but none of the paperwork has been started and wasn’t sure when they would get it in, and finally another call from the well and septic guy telling how much the inspection would be plus they would likely have to dig the well. We have always been nervous that they would make us drill a new well…now we will finally know. So now I lay back in bed not feeling well and with very bad head pain 😓.

I haven’t been posting about my head pain because it was becoming my life and I hated that but the fact is, it is my life that is why the diagnosis includes “new daily persistent headache” which means it never really goes away. I just need to learn ways to live with the pain like putting ear plugs in to go to church, into restaurants or basically anywhere where things are loud and chaotic, which means sometimes in my own home or car when the kids are with me. Or sleep, this I am good at but naps don’t work when you don’t or can’t take them. Or take the medicine that I can only take two times a week for pain because there is no alternative.

Our live have completely changed for this season in our lives. I know I am better than 6 months ago but then again I am not because it still has control over my life everyday. I go back to the Head Pain clinic next Monday. So we will see what the next steps are on this journey.

Mindy Richmond: Heather I Am so sorry all this is going on, but you know I’m praying extra hard for you. Remember God is fighting for you still, just take one day, one hour if needed, at a time. You will get through this and will look back and be amazed at what you have survived and endured. I love you!
Stephanie Jordan Grr.. too much. Praying that the Lord will make His power and peace known in this situation. Love you.
Heather Loose Johnson: Love you guys too. Thank you for being there for me and lifting me in prayer. Sometimes it’s just too much to carry frown emoticon
Shannen Rowe Dubose: That’s A LOT to deal with! I’ll continue praying for you Heather.
Heather Dwyer Trudeau: I was wondering how you were doing, so I’m glad you posted. You continue to be in my prayers
Kathy Smith: Praying for you, honey.
Kristen Long: Hang in there. Text me about lunch Monday if timing works out with your appts. Or if you just want to come over and chat for a bit.
John Silverstone: Still praying.
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MHNI Visit #3

My mom and I are on our way to down to MHNI for a full day of apts. Today’s visit will also determine if I will be able to continue on Short term disability and whether or not my job will any longer be held for me. So much in limbo right now. My last day of FMLA is May 25th and STD lasts until Aug 6th. I’m not even sure what to pray for at this point. But they will do another nerve block today which will hopefully give me a week of relief but when it wears off the migraines and headaches come back in full.

Today I met with Dr. Lake (pain Psychologist), Dr. Da Silva (Neurologist) and Andrea (physical therapist.  The main things that came from this were that they titrated Norflex daily down to stop the medication due to side effects.  I was still also increasing Lyrica (but side effects from Lyrica were also starting to take effect as the dose increases, but I am still willing to give it a try). Dr. Da Silva also recommended that I meet with the General Pain Division, Dr. Shamis to see if there might be more options for other nerve blocks to try.  Dr. Da Silva also did another nerve block in my temples and doubled the steroid.  I am very much looking forward to a few days of pain relief.

Starting to lose hope that the doctors will ever really figure out what is going on and how to help solve it.

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Medical Notes from the visit to MHNI

Headaches: Some improvement continuing, but has also had some very severe headaches typically related to extensive talking with a friend that triggered a three day incapacitating headache, exertion in combination with a head-down position when she took a walk with her family and watched her kids picking up rocks and head down position when working at the computer.

A supraortbital aricular temporal block from Dr. Da Silva on 4/22/15 gave her a clear week of relief wtih a headache level dropping to a mild level for extended periods of time.  The severe headache triggered teh the walk and looking down occurred exactly one week after that block.  She will have a repeat block today by Dr. Da Silva, followed by a possible Radio-frequency Nerve Root Ablation.

She reports an increase in stress concerning her ability to return to work successfully, and other financial concerns that are unrelated to work including trying to sell a rental house that they are in the process of repairing after it had been vandalized by their tenants.  Her FMLA expires on May 25th.  Her employer (Neogen) has sent her a note explaining that they will not be legally required to maintain her job for her, but may be willing to do so when they receive appropriate information from us.  She logged in the appropriate form with Medical Records today and I put her name up for discussion with multidisciplinary treatment team for our next meeting on Tuesday, May 19.  I am also sending her a copy of this note which outlines her progress and behavioral treatment.

As she explained the ergonomics of the job to me,  it involves a great deal of laboratory work, making media, working with big dishes of media, and working over a safety hood that requires her to lean forward and extend her arms out in front of her which put some strain on her neck and back musculature.  We discussed trying to keep her self centered over her hips, but I also talked with our physical therapist about these issues and how that might be addressed in physical therapy.  She is scheduled to see our physical therapist, Andre, shortly after this apt today.

Also, she has continued to have some cognitive issues with word finding and word substitution.  Her job requires significant Cognitive demands.  In my judgement we are making progress but not in a position where she will effectively make a return to work before May 25th.  However, this is a treatment team decision.  She will see Dr. Da Silva, her primary neurologist with our group later this afternoon.

Anxiety and depression remain improved: however some return of depression after the last weekend with severe headache after she spent three hours talking with her friend.

She reports excellent adherence with relaxation techniques, and states they are quite helpful with the moderate or low-end severe headaches although it is very difficult to relax when the headache reaches an intense or incapacitating level.

I introduced her to biofeedback training. Bitemporal EMG was 2.25 mcV at baseline which is normal range.  However, when she would talk, it would rise and remain about 7 mcV, requiring some sustained attention to bring it back to a lower level.  With visual feedback she was able to drop this to 1.5 mcV and sustain it at that level, at times dropping a little below that, which is our target range.  I underscored the importance of continued attention to jaw relaxation, particularly while she is doing other activities, and returning to her baseline after talking with some sustained attention.  The temporalis may play a key role in some of the vice-like pain over the ears extending to the top of her head.  She also reports pain at times in the TMJ area, that may even extend into the mandible.

Right cervical trapezius EMG was elevated to 3.5 mcV range at baseline.  With instructions to sit with good back support and imagine that she was suspended from a cord with extension of her spinal column aligning her neck through the top of her head, she immediately dropped to below 1.5 mcV.  We discussed the importance of ergonomics and how she keeps her head from being in a down position, using a music stand to hold papers that she may need to work from, consideration of getting a monitor at eye level rather than hunching over to look at her laptop, not sitting on the couch when working on her computer at home, consideration of a wireless keyboard that she could hold on her lap while looking at the screen at eye level.  We also discussed the importance of returning to good posture positions and jaw relaxation as a baseline condition.

I will see her again at her next medical return visit.  She stated the session was quite helpful to her.

Dr. Lake

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The Plan: v 8.0 – Dr. Masih

Really bad night last night. Though the meds I am on provide brief periods of relief they still do not allow me to visit with many people (even 2 sometimes) without having a full blown, pain level 9+, headache. That is what happened last night. After company had left, I was left with a headache, pain level 9+ That lasted from about 5:30 until I was finally able to fall asleep. And then I was awake on and off all night with headache pain. I took a shower this morning and that seemed to help a bit. In addition to the headache yesterday I also made the mistake of not checking the ingredient list of Jelly Belly jellybeans. They are one of the few jellybean makers that do not use artificial flavoring. I tasted the
coconut and thought it’s just a tiny jellybean. Well it got me and for some reason it took awhile to figure it out, oh yah my head felt like it was splitting open. Once I figured it out I took my antihistamine and within
about 25 minutes the stomach cramping had resolved and I only had the head to deal with. Better one problem at a time than two.

I have been feeling like I am going to pass out every time I stand and walk and then I get extremely weak feeling from head to toe. Like I am having to lift a bar bell. I wonder why they never said anything in the hospital before I left. They just said drink lots of water. When my blood pressure plummeted to 83/43 they put me back on IV fluids but didn’t really instruct me how to manage when I left. So all of this advice has been ever so helpful.

So my doctor apt today couldn’t have been timed better. God is in Control …relax. I have to keep reminding myself of this.

Safe trip down. Praying for good direction from Dr Masih

Update from Dr: He agrees with the resident dr who had been treating me in the hospital that this is “just” a migraine. But he also agrees that I am an extreme case. So he adjusted the meds I am on (Increased Keppra, increased Elavil, and stop neurontin). I am to call him back in a week but in the meantime he wants me to look into 2 in patient headache clinics in case the increase in meds does not work. One of the clinics is in Chelsea, MI (Michigan Head-Pain Neurological Institute: MHNI) and the other is in Chicago (Diamond Headache Clinic).

It doesn’t seem like much of a game plan but at least it is something. In the meantime I need to keep overstimulation to a minimum and try to start getting some exercise as I can handle it.

Nathan Gillikin:  Heather, have they diagnosed your headache as hemipalegic migraine? Do some research on that. Hemi headaches are as debilitating as what yours sound like. My wife had a few of those. She had slowed speech and partial paralysis as well. One hospital tried to push meds for stroke one time. I had to step in and tell them about hemi-headaches. Not much is known about them and they are hard to diagnose.