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MHNI #14

March 31st, 2016: I remained at baseline NDPH all day which was a great relief compared to the days leading up to this visit.  I took an Amerge just to make sure that a migraine didn’t decide to join or that the NDPH didn’t increase.

I had such a great day.  My friend Dawn rode down with me and we talked all the way.  I drove and I talked and my head pain did not increase…it was wonderful.  I even drove home and talked on the phone for a good majority of the trip home since Dawn had food coma and I was trying to prevent going into food coma 😉

I was really worried about my appointments today because I had to tell them about Mayo Clinic, but it turns out they already knew because they all had to sign off on the records to go to Mayo.  They were very supportive and were anxious to hear any findings from Mayo.  What a relief!  And anxiety for no reason.  Oh well, I just didn’t want them to think I was going behind their back…I really just wanted to have someone look further into what might be causing the constant head pain.  Almost 15 months now!  Never how I imagined it would be, but have done my best to take it in stride.  So glad that my Dr’s at MHNI had my back about going to Mayo Clinic.  I leave in 5 days.

In between Dr. apts Dawn and I went shopping to 5 Below….great store, but you really have to limit yourself or you could spend way to much money without even knowing it.  And then we were going to meet up with my high school friends Kristen and Steve and their son Eli.  Unfortunately they were delayed and we only got to give hugs, say Hi and good-bye.  But the food at Olive Garden was awesome.  I hadn’t been there in so long.

Oh and I stayed awake all day!!!  Big deal for me really!  Thanks for making the trip with me Dawn…it was much needed girl time!

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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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Do you have trouble with blood draws or IV starts?

Ever since I was a patient at Chelsea Hospital in the inpatient program through MHNI I have had veins that seem to collapse, create a hematoma (a solid swelling of clotted blood within the tissues), and act like brittle paper.  While I was there I had 31 needle pokes to either draw blood or start new IV’s because the previous one was hurting so bad.  I was on a medication called DHE (Dihydroergotamine) that causes vasoconstriction (the constriction of blood vessels, which increases blood pressure) and tends to be really rough on veins.

So every time I have to go the ER or have blood drawn I end up with what you see below.  The bruises on the hand don’t show up very well but boy do they hurt.  They always try the hand first and then work their way up my arm trying to find a vein and trying to find a vein that won’t collapse.    When they just can’t find a vein, even after 6 pokes…they finally call in an IV team (I had never heard of it until my last ER visit) that uses ultrasound to find a vein deep down that wouldn’t collapse.  It was so fast and easy…I wish they could always do that, but they can’t.

One of the biggest problems I have is that if I have a reason to go to the ER or have a procedure done, I am often in the middle of a migraine, so I am very dehydrated.  Hopefully having the Migraine Cave stocked with water (which has already been helpful) will make this plan more effective. But after what happened during my last ER visit (pics below) I have come up with a plan:

  

MY NEW BLOOD DRAW/IV PLAN

My plan came about accidentally really.  I was shopping at Walmart in a clearance section and came across the gloves that are show below, called Red Hot gloves.  They came with two hand warmers that you insert into the top of the hand into a little pocket.  The hothands that are in the picture are cheap replacements since they are only 1 time use.

About a half an hour before a procedure, blood draw or IV poke I plan to put these on to heat up the veins on the top of my hands.  The idea came from MHNI wear they often submerse my hand and arm into warm water and then a lab used one of the hand warmers after I told them that my veins were difficult to find.

I get so sick of the phlebotomists that just think they are going to be “the one” that gets it on the first try.  Four tries later, after not taking my advice about heat on my hands I have 4 hematomas and they have finally found a vein.

Now I can always have heat on my hands coming into the lab, hospital, ER, etc.  I don’t have to deal with the person that won’t listen to me that my hands need to be heated in order to draw blood or place an IV.  I took my health care into my own hands.

The second part of my plan is only for times when I have scheduled procedures or blood draws, this will not work when I end up in the ER.  But hydration is soooo important for blood draws and IV starts.  This last blood draw, I drank water from the time I woke until 1:00pm when I got my blood drawn.  I read that 64 oz. the day before and the day of is the most helpful amount and that excessive amounts are not necessary.


This is my new water cup for my Migraine Cave…it holds the 16oz bottles of water perfectly 🙂  And it is soooo cute!

My Plan In Summary

  1. Hand warming gloves about a half an hour before blood draw/IV start
  2. Hydration: 64 oz the day before if possible and 64 oz the day of the blood draw/IV start.

 

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Botox: MHNI visit #6

6/18/15 My insurance company finally approved the Botox for 3 rounds of injections through the end of the year. Headaches have been pretty awful lately so I am really hoping this does something positive.

June 18th

Botox is done. It was awful…30 injections in my face, around my head, down my neck and shoulders.  So yay!  No more wrinkles.  I did have to do a Toradol shot, so I am feeling a lot better now.  So my mom and I went off to lunch at Five Guys Burger where I was sorely disappointed because their fries are deep fried in Peanut Oil (allergic to peanuts) and the oil was everywhere. Just hoping I don’t have a reaction. Then off to Trader Joes where I bought spicy California roll and the very best spicy black bean dip!

On our way home to rest. Long morning!!  Unfortunately the peanut oil or the California roll hit me bad on the drive home…first the bloating (I can literally feel my pants get tighter) then the gas and then the cramping.  Luckily I had my antihistamines with me and took it but I always feel crappy for several hours after..until the bloating and gas and cramping stop.

So all in all a fun day 🙂  Haha!

 

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MHNI Visit #5

Mother/Daughter day aka more Dr apts. We tried a new restaurant out today and are having lunch between apts at Noodles and company.

Really the only changes that occurred today were that Lyrica was increased to 150 mg a day and Imitrex 100 mg was added as an abortive medication.

I did receive the Doctor notes from my pain psychologist and it is always interesting to see what I talk about and what I am stressed about, etc.

Medical notes from Dr. Lake

Headaches: Mixed experience with headaches since RFA procedure with Dr. Shamas on 5/22/15.  She had some significant improvement within about a week of the RFA which would be unusual as a direct result of the RFA.  At that point she began doing more when the pain level was at a low range (1-2 on a 5 point scale), may have done too much, her headaches escalated, and she began to back off on the level of activity.  More recently in the past 2 1/2 weeks there has been mixed ups and downs with some severe headaches back up to the incapacitating level, but she understands this is still quite early to determine the efficacy of the RFA procedure – we would not respect significant results this early.

Botox: It was her understanding it would be scheduled today with Dr. Da Silva.  I am giving her chart to our charge nurse to confirm that the product is available and planned for today’s visit although that does clearly appear to be Dr. Da Silva’s intention in documentation of the chart (unfortunately Heather informed in a passing conversation with me at the end of the day that her insurance will not cover Botox at this time – I did not have an opportunity to explore that further).

Return to Work Issues: We faxed the FMLA forms that she had given us to her work Human Resources group on 5/22/15.  Heather informed me today that although we had extended her return to work date until 8/16/15, her work has given her another form different than the last one that they insist must be completed today.  I am arranging for her to talk with Margaret in our medical records group to review the form and determine what might be reasonable in terms of communicating with them and actually completing this.  To get this kind of form completed on the day she is seen here is not a reasonable expectation, but she will show it to Dr. Da Silva and get his overall view of it.  I do not believe she is in any position to sustain a successful return to her former job at this time and we will need to reassess in early August if it would be possible for her to return to work by 8/16/15.

Carpal tunnel syndrome: She has had some episodes of significant carpal tunnel symptoms in the past, and has carpal tunnel braces that she wears when symptoms flare.  Normally she does not wear it.  She had some issues with her right arm that she addressed by wearing the brace continuously for a period of time, and function and appearance improved significantly.  I encouraged her to consider wearing the brace routinely at night, to minimize any low-end RE:incipient irritations of the nerve.  This is particularly critical both in terms of her work as a microbiologist but also in terms of her alternative potential employment as a photographer since she holds the camera with her right hand that is difficult when the carpal tunnel is acting up.  She has however taken some pictures recently of her kids showing me the change from the first and last day of school and a recent haircut and is trying to be more active in general.

Functioning: She stated she is trying to do more walking and other activities when she feels better, trying to find the right balance between overextending herself as noted above when she had those 5 good days in a row shortly after the RFA.

Cognitive functioning: She continues to report some words switching such as telling her kids “load the refrigerator” when she meant loading the dishwasher.  Although she has had occasional examples of this occurring in the past, the frequency is now several times a day, and appears correlated with increasing her dose of Lyrica.  She states when she does at the beginning of the week it is more noticeable and appears to improve a bit as the week progresses.  She is currently at 125 mg twice a day and will be titrating to Dr. Da Silva’s recommended 150 mg twice a day.  She is not sure at this point how much Lyrica is helping her.  She did report some similar kids of issues at my last session with her before the RFA procedure.

Adherence with relaxation and biofeedback techniques: Excellent.  We did not have an opportunity to review some of that in session today but she gave me examples of using the techniques on an ongoing basis as well as helping herself relax as she goes through the physical therapy procedures with her neck which she feels is helping improve range of motion function as well.  She will see our physical therapist Andrea Sherman later today and request another physical therapy prescription.

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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

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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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MHNI visit #1 following Chelsea

On our way back to Ann Arbor for follow up apts. three of them back to back. My back is going to be my biggest challenge, well that and the ever present migraine. Luckily the migraine has been much more manageable the past couple of days but its presence still makes concentration difficult. Weather looks good for most of our trip though so that is a blessing.

Dr. Lake, the pain psychologist:  It was his voice on the relaxation CD that helped get me through some tough times.  I really enjoyed visiting with him again.  I feel like I can truly speak freely and tell him about what is going on in my life…the good and the bad.  I also got to try a little bit of biofeedback to see what it was all about.

Andrea, the physical therapist:  She did some hands on stuff and discovered that a major trigger point for me is in my temple region.  She prescribed Ethyl Chloride spray to help relieve the pain for a brief period.  She also helped me with doing stairs since my back was still in pretty bad shape after back to back Blood Patches.

Dr. Arnaldo DaSilva, neurologist, head pain specialty: On this visit I just met with Gail, the PA and decided to keep all of my meds the same since I had just gotten out of the hospital 2 days ago.  She also thought I had thrush in my mouth, so she prescribed an antifungal in case I needed it.

Ethyl Chloride Spray

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So apparently when you use Biofreeze to sooth post IV arm pain it is not a good idea to put a hot rice bag on afterwards. It was several hours and the Biofreeze didn’t do much. Oops. Off to ice it now!  The red did finally go away but the pain remained.  Nothing could touch my entire forearm on the top…it was pretty awful.

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My Stay at Chelsea, MHNI Inpatient program: Plan v 10.0-14

April 1st: The first full day was really just getting settled in and getting an IV going in order to deliver medications.  I met with doctors to come up with a plan and the nurses started the infusions that night.  I woke up this morning for the first time with no headache in quite some time and it was lovely. However within an hour or so it was all back. But the relief was great.  Medications in the infusion included: DHE, Singular, Trazadone to help me sleep and Klonopin to help with the anxiety.

April 2nd: I met with the doctors and they came up with the first procedure to try….a bilateral greater occipital Marcaine nerve block.  Even though I had a bilateral occipital nerve block done at Sparrow (which didn’t do anything) during my second hospital stay, they wanted to try it again.  The way they did the procedure was much simpler and less painful than the one at Sparrow.

Meds plan: At the same time taking me off the meds that were not working; Keppra, Neurontin, Elavil.  The Trazadone really helped me sleep last night and it feels great to have deep sleep. It’s been awhile.

Around noon I did some extremely basic yoga in a chair but the movements of the head and neck resulted in a terrible migraine.  I also had a great deal of jaw pain today.  I am coming to the end of day two. They have me on a fair amount of medications for the time being.  Just trying various combos.

The IV Saga Begins: When it was time for the infusions (IV meds) the IV line I had in was really painful so they removed it and had the same problem getting a new IV started, 4 pokes by 3 nurses later and the IV was in and meds were given. Quite a traumatic experience because the head pain was so bad and the infusions aren’t pleasant. However once it was all done, I crashed for two hours, and woke up with a much reduced migraine.
So I keep going and keep trying whatever they have.

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April 4th: More fun with the grandparents at Lego day at the library.  Gideon seems to be having so much fun with Grandma and Grandpa.  Josiah is with dad because he is in school and can’t miss just because I am in the hospital.

April 4th Gideon

Rough day today. Headache has peaked. Just praying they find something that will help.

Let’s go State!!! Man I wish goose bumps didn’t hurt my head because that was an awesome Stars spangled Banner 👍 Go Green Proud to be a spartan. Great elite 8 game and great game today. Stay calm and Sparty On. Now Wisconsin need to represent the Big 10 in the championship game.

March 28th sparty

April 5th: Today is Easter and Dan’s 40th birthday.  Dan arrived just in time to Easter Sunday service.   I was looking forward to communion on this Easter Sunday and even invited Dan to join me. However when the service started it became clear that it was a catholic service where we were not allowed to partake but can receive a blessing because we are not Catholic. I was so very disappointed. Time to simply dive into the Bible this  morning. I know Catholics feel very strongly about this but my feeling is that if you believe that Christ is your Lord and Savior and that he died on the cross for you you should never be banned from taking communion. Nowhere in the Bible does Jesus tell you to turn away those who believe in him. And today I felt turned away, I felt not good enough and shamed as they walk around and only give communion to those who attend a Catholic Church. Whose to say they even believe! I don’t mean to offend I will just never understand how the Catholic Church can set themselves apart when the word Catholic means all embracing.

Aside from my rant earlier I wanted to say a very Happy Easter. Christ is Risen. Christ is Risen indeed!! PTL. I also wanted to say a huge Thank You to my mom Sherry Dunne Weaver and dad Bob Weaver for taken such great care of our kids. For taking them to church and for making a special Easter. I am so bummed that I couldn’t put together their Easter basket, dye eggs and hide them for a fun Easter Egg hunt.

April 3rd Gideon

Thank you, thank you thank you. I love you guys and I don’t know how I would be getting through this rough patch on my life. Oh and I love my new pjs. I already put them on!!

April 5th
And a Huge Thank you to my husband who spent the day with me in the hospital going to an Easter service that meant pretty much nothing.  But at least we got to visit.  He has been so wonderful through all of this.  It is a huge adjustment with me not working and me staying with my mom a lot.  But we are making it through somehow!

April 6th: Here is a good explanation of the procedure I am having done today. And Dr Sapor remains the lead Dr. here at the clinic. I will go I. At about 1:00. Tomorrow I will be having another lumbar puncture. Bring on the prayers my prayer warriors!!

Nerve Blocks : They did a C2, C3, C4 and C5 bilateral facet block.

IV Saga continues: My veins suck and they won’t do a pic line due to high risks with the meds I am on. I have now been poked 14 times that have resulted in 3 iv lines that have all failed and one blood draw. So I currently have no IV and need one for my procedure at 1:00. And to top it off my head is not doing well. Oh and I can’t eat or drink anything so no comfort eating either. On a bright note the day is not likely to get much worse

If anyone is out shopping and finds Cadberry Cream eggs (original) I will pay you back for them. They are my absolute favorite candy on the earth and luckily for me they don’t have coconut oil 😉

April 7th: Heading in for another lumbar puncture very soon. A bit nervous after the last one lead to a spinal headache. They are doing it again because the Hayes Green Beach ER doctor didn’t take pressures which are important to determine whether or not they will have to do another blood patch.

Lumbar puncture/Spinal tap went well: NOT.  I now have another spinal headache. They are awful but at least laying down helps but the underlying headache that got me here is there whether I am standing or sitting.  In other words…it sucks big time!!!!!!!!!!!!!!!!!!

Unfortunately the ice I need to help with swelling from the facet blocks are increases head pain.  But I need the ice to keep the swelling down.  Ugh.

IV Saga Continues: they had to start anther IV today and it took 1 nurse 4 pokes and another 3 to get the line going.  Plus the pain from the first IV has left my right arm very weak and quite painful.

April 8th: Today is a day that I am truly having difficulty praying. Crying comes freely though. So I am needing to lean on my prayer warriors. The spinal tap yesterday resulted in a spinal headache and will now need a blood patch. I am terrified based on my last experience which was horrendous. Rough day but at least the spinal headache is positional which means I get some relief when laying completely flat.

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The blood patch is done and I am back in my room. Not nearly as traumatic as the I had done at Hayes Green Beach. The prayers were heard my friends. It resolved the spinal headache immediately which is expected but the migraine has been exacerbated in the process. So hopefully a day of complete rest and we can get back to resolving this damn migraine. Be gone, I say, Be gone!

Hospital war wounds. And my Mickey Mouse shirt got me through it all today!! Well that and God and all of your prayers of course.

There isn’t much to do in a hospital room that doesn’t have wifi that I can’t watch Netflix no my iPad.  So I have been watching MSU basketball (see above) and The Voice.  Come on let’s go Joshua Davis (from Traverse City, MI).

April 9th: Nothing like a tornado warning and being sent to the hospital basement to help my most severe headache of my stay.  I took a blanket and laid on the floor until we had to come back up stairs. There were so many people I just wanted to bolt!

Long day!  They did an X-ray of the neck just to be sure they weren’t missing anything.  The technician was a bitch and was completely unaware that I was about to puke even though I kept telling her that was going to puke.  My legs were giving out and when she grabbed my head she grabbed it at the temples and that resulted in much more pain and nausea.  She just went about her business and that lead to more dizziness and nausea. As far as today goes, it is one of the worst days yet.

I was given a CD with relaxation/meditation…I wasn’t sure at first, but as I listened more I felt comfortable.  Dr. Lake talked me through it the whole way which prevented my mind from wandering.  In fact I don’t think I ever made it through the entire CD before I fell asleep.  So the relaxation part worked very well.

Meds update: The doctors put me back on Prozac and continue to try various abortive medications to try and knock out the migraine, but with the spinal headache is now making it almost impossible to differentiate between the migraine, the headache and the spinal headache

But it was a great day in the end because my mom came to visit, so I didn’t have to be alone through one of the hardest days. Yay for moms who know when their daughters just need them.

April 10th: Today is another day of severe pain that make me wonder if it will ever go away. Meeting with dr now.

They think they put to much blood in during the blood patch so the headache went from not enough fluid to too much fluid. It sounds like they can correct it with meds instead of more surgery. They are also going to give me a day of pain meds. Pretty sure the desperation is becoming more evident every day. I have no idea how you survived for 6 months. All I want to do is sleep.

I’m now on 11 weeks straight of migraine and head pain.  I am at one of the best head/pain clinics in the US and they have no real answers and no resolution. In fact they are resorting to the one thing they only use as a last resort, narcotics. Today I don’t even care about the consequences I just want relief.

It is truly amazing what a shot of Nubain (an analgesic) will do for a person who had been in constant pain for so long. This is not a long term play just a day a relief and I’ll take it. I even took a shower and have friends coming to visit. Things are looking a little bit up today 😉April 10th me again

Visitors: Kristen and Steve and their kiddos came to visit right at the perfect time. It was so great to see them. They have been such a huge support system so it was nice to finally see them in person. The meds kicked in and Kristen and I were actually ableto visit.

After they left I had already walked to the front of the hospital so I decided to do some shopping for the kiddos and for myself. I realized that it had been about 10 weeks since I stepped foot in a store. So the little gift shop, while overpriced, was fun to do some shopping.

April 10th me

April 11th: Depression is quite severe today.

April 9th

This has been me almost the entire day. I sat for about 10 minutes for lunch and another 10 for a late dinner. Head pain is unbelievable, depression is quite severe after learning that the plan for discharge is on Monday. The nausea from the Nubain they have me on for 24hrs was wonderful to have the break but the fall was hard and I slept most of the day. Cried a fair amount. I don’t tell this for sympathy really. Just giving the update So if they really send me home on Monday with no improvement I will head back to my moms and figure out where we go next. I still can’t believe how debilitating a migraine can be and how little people really can understand the chronic nature of it unless they have actually had a migraine that lasts for weeks at a time or gets them daily for days on end. So it has been good to meet a few people that know my pain and how unbelievably disabling they really are. 11 weeks of missing out on everything. 11 weeks passing me by holidays, birthdays, swim meets, Gideon learning to ride his bike, Josiah mastering the wake board. Church, home group, friends, shopping, working, my family in one place enjoying a meal together, seeing my family. And the list goes on. I have been hospitalized for a total of 4 weeks so far and they have no idea how to control this damn migraine. I don’t know where we will go from here which is why the depression has grasped ahold quite tightly.

All the love I got following this post today:

Susie Wilkey Harloff: Sending love your way. I get migraines, but they are knocked out quickly with a Midrin. I can’t even begin to imagine having one for as long as you have. Hang in there.
Dawn Tomlin: It all is sucky! And depressed is normal for what you’re dealing with. I know you are strong and God is your strength. It’s ok to show the dark side of things. No answers and uncertainties would make me depressed too. You will pull through this you will get back to all those things!! I believe there is a way and meds or no meds that headache has got to leave!!! In Jesus name!!! Amen!!!
Nikki Gruesbeck: praying for you Heather! this must be so very hard! Lean hard on Jesus, He is your strength and when we trust in Him no pain is ever wasted. Lord we know that YOU are the GREAT Physician and ALL things are Possible for you. We entrust our sister Heather into your capable hands and ask that you lift her spirit, encourage her as only You can, give her relief from this migraine and impart wisdom to the doctors who are trying to find the cause of this. I pray also that you cover her sweet boys and hubby in your peace and give her back the time ‘the locust have eaten’ because we KNOW that YOU are ABLE! It is in your MIGHTY and POWERFUL name we ask- Amen.
Mindy Richmond: Oh Heather I don’t even know what to say anymore. My heart breaks when I read about all you are missing with your kids and family as I missed a lot when I was in my bad place too. But God restored all that for me in wonderful ways and I know he’ll do that for you too. We are still praying and God is still fighting.
Carrie McHugh David: Heather I feel your pain and do know exactly how you are feeling. I don’t understand why they would release you with no progress or treatment plan. Non migraines I don’t feel understand how disabling these headaches can be. I have missed many of life’s events over the past 7 years. I was really praying that they would have a solution for you. I am 9 days in a row with some type of headache. Very frustrating I know. Please let me know if you need to talk. I will pm you my phone number. Keep the faith and try not to let this get you down.
Kari Alvaro: Oh Heather, I don’t know your pain and I can’t even begin to understand the deep sadness that results from “missing out.” Please know that I am praying for you in groans that only the Holy Spirit can interpret as I continue to ask the Lord of all creation to intervene. We miss you

April 11th

April 12th: Along with all of the positive and encouraging words this morning🙏 I woke up to this sweat guy. Pain level and fatigue continue. Now they are thinking another blood patch possibly. But we won’t be sure until Monday.

April 12th

A much needed note from my mom today: Boys enjoyed church. Gideon’s room sandbox was refilled with rice with some colored rice mixed in. Great idea! Might be idea for downstairs. Kids were loving it. Different feel than sand.  Blood patch does seem reasonable. Take one day at time.  Bob and Josiah off to church to unload and get tables set for books. We will go later. Josiah needed break from Gideon he said. Now that Gideon can keep up with him on bike!!! We will pay Josiah to work today. Did you want us to donate the little bike. No way will Gideon ride it again. Give it to little boy!! Gideon says “I love you””

April 19th

April 13th: Heading into get an MRI of my neck and then at 4:00 I go in for another blood patch. Besides that I sleep a lot. I finally figured out that laying completely flat on my stomach with my head turned to the right I could get some relief.  The blood patch was so bad, but in a very different way than the first one.  I had searing pain between the eyes that has now shifted my head pain to my left side.

And after all of that they are just going to discharge me.  Ugh!  After today’s tests and surgery I will be discharged tomorrow and heading back to my moms house. Life is far from normal yet but I am trying to rely on Jesus. Not all that successfully but at least I am trying. Something has got to work right?

My throat really started to hurt today and I had an awful taste in my mouth, combined with cotton mouth.  Just one more thing.

April 14th: Discharge Day

Settled back in at my moms for the time being. I have a follow up apt on Thursday to meet with a few more drs.  No answers really in fact they started my meeting this morning with “we have no idea what is causing or how to stop this headache but we’re not going to give up.”  So a day at a time is all I can do.  Oh and I left with a very sore throat and lots of gunk on my tongue.  Nurse had no idea what it was, so they just sent me home without figuring out what was wrong.

IV Saga continued throughout my entire stay:  I ended up with 31 needle pokes, lots and lots, of bruising and an arm that is very, very week and that I can hardly touch with anything at all, even a simple brush of my fingers across the arm.

Medications Tried During my 14 day stay:

  1. DHE (dihydroergotamine mesylate)
  2. Lyrica (pregabalin)
  3. Norflex (Orphenadrine)
  4. Prozac (fluoxetine)
  5. Trazaodone
  6. Klonopin (Clonazepam)
  7. Prilosec (Ompeprazole)
  8. Toradol (Ketorolac)
  9. Midrin (Isometheptene cap)
  10. Zanaflex (Tizanidined)
  11. Lioresal (Baclofen)
  12. Flexeril (Cyclobenzaprine)
  13. Skelaxin (Metaxalone)
  14. Robaxin (Methocarbamol)
  15. Zofran (Ondansetrol)
  16. Nubain (analgesic)
  17. Imitrex (Sumatriptan)
  18. Magnesium

List of Meds that I went home on:

  1. Lyrica (preventative)
  2. Prozac
  3. Trazadone (for sleep)
  4. Klonopine (for anxiety)
  5. Prilosec
  6. Toradol (as an abortive): IM injections (fun)
  7. Imitrex (as an abortive)

 

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Hospital Admittance #3: Chelsea Hospital MHNI

On our way to Chelsea to the inpatient Michigan head-pain neurological institute. My insurance has approved the stay and I will be there for 7-10 days. Trusting that God’s got this!

The 2nd of many trips my mom and I would be making to Chelsea Community Hospital

March 31st on our way

My set up: Check out the crock pot at my side to heat my rice bags.  They actually let me keep it the entire time 🙂

Gideon and his Olaf that he made this morning with Grandma. He was so proud and a little sad when it had fallen over and started to melt this afternoon.

March 31st

All settled and dinner ordered just waiting to see the nurse to find out what the plan is.  A few questions I got on FB during the first day at Chelsea.

Heather Loose Johnson And after 4 attempts they finally got an IV started.
Amy Rogers looks like we had the same problem
Carrie McHugh David Please keep me posted. I hope you get some answers
Heather Loose Johnson I definitely will. I so wish insurance wasn’t so stupid and that you could be here too
Carrie McHugh David Me too! I just don’t want to go through the same testing that I have already gone through, so I am curious to see what test they are doing to you.
Heather Loose Johnson The only thing they had me do was the EEG and EKG because I just had the MRI, MRA and MRV. I just met with the Drs and they did not mention any tests just various drugs they are going to try. To knock this sucker down. I woke today with one of the headaches very diminished but the longer I am awake the more it comes back. But I will take 20 minutes of relief to start the day . It just sucks that it has to come back a feeling you know better than most. Do you know why yours started or did they never figure that out for you?
Cindyheath Robert Alling Are all the teats coming back normal?
Heather Loose Johnson Yes my tests are normal hehe and so are all of my test results.