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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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Rebound Headache Continues

When they first gave me a diagnosis of the Rebound headache, they told me it was extremely difficult to treat and that it was going to be an extremely difficult road. I was already in the middle of what I thought was the difficult road when I asked how long this would last. Their best guess was two weeks or so. I clung on to the former, the two weeks. In fact I almost counted down, as if at the 2 week mark I would magically be better. Unfortunately I fell into the “or so” category and the difficult road had not even really begun, well it had, but it was far from over and I believe it is still far from over.

The more I learn about the Rebound headache the more I am amazed about it. I am amazed that I fell victim to it…I was far from an abuser of medicine, I was simply taking medication according to doctors it’s just that I had seen so many doctors over the course of 2 weeks time that I was on so many different medications and had received so many through shots that when I decided on my own to stop them all cold turkey so that I could go to work with a clear head there were major consequences. And those consequences I am now dealing with every day.

I am on day 16 of this Rebound headache. I have never really known anything so persistent in all my life. It never leaves…it might lessen, but it has never gone away in those 16 days. And then come the times when it is so bad that I don’t know what I am going to do, how in the world I will ever be able to push through the pain. Night times seem to be the worst this week. And then came yesterday, the pain was this bad all day. Every time I tried to overcome it I would get so nauseous that I would have to take something or risk finding out what it might feel like to throw up with this headache. I chose Zofran!! After having experienced a full blown migraine that lasted 9 days and a spinal headache that resulted in a spinal blood patch, over the course of my Saga, the pain that I have experienced during this 16 and counting day Rebound headache can really only be compared to….I got nothing! Nothing to date in my life had really compared. Most likely due to the longevity but also the utter intensity of the pain at its worst.

So today I was exhausted from pushing or rather relaxing through the pain alI day yesterday. I have learned to accomplish this in a very dark room, laying flat in bed, with a heated rice bag over my eyes and head. On days like yesterday, when the bag starts to cool, I get it reheated (by Dan or Josiah) and start over and when that no longer gave relief, I finally took a shower and then finally sleep. The day after one of these days is spent mostly sleeping most likely from exhaustion (Later I would figure out that this is what a migraine hangover or postdrome is like after everyone). So today I have slept most of the day, but the headache has lessened enough to provide a real update.

So with all that said, this is not over and I am very much still in the middle of this awful Rebound Headache. No idea what tomorrow will bring, just the nature of this thing and we have no idea what the “or so” really means. So I continue to pray and I know many of you out there are praying for me and I thank you for that Other than that, things are pretty quiet around the house and the boys are figuring out their routines without me or with me only to help here and there to minimally prod them along in the right direction.

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ER visit #3…I have the best friends

I went to work feeling ok…still a mild headache which had remained constant all week.  But I didn’t take any medication at all this week.

I did however make great strides in helping out at work.  After combing through lots and lots of notes, it truly was back to the beginning we needed to go.  So I gathered up what information I had found and went over it with my boss.  At 3:00 pm we had a meeting with his boss to discuss our findings.  At this point we were all very hopeful that this would solve the problems the facility had been having for the past 7 years.  But we wouldn’t know until all the final details were worked out and we actually tried it (for which I would not be there, but on this day I didn’t know that it would be the very last day I worked at this place of employment).  The meeting ended at about 4:00 and at approximately 4:15 pm unbelievable pain struck above my right eye.  It came on so fast and so hard that I wasn’t sure how I would get home.  But I made it and went straight to back to bed.

My first thought was that the spinal headache has returned. Back to bed I go hi ho hi ho.  Laying down helped a little bit, but the pain wasn’t completely gone when I laid down, so there was a chance that it wasn’t a spinal headache either.  I just didn’t know what to do, but by 10:00 pm the pain was so severe that I decided I needed to go into the ER, but this time I was going to go to Sparrow ER.  Now to be done with this bleeping headache (little did I know)!!

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The only problem is that the boys are in bed and I can’t drive myself.  Social media to my rescue.  I asked for a ride to the ER and luckily my dear friend Christina stepped up to the plate.  She even stayed with me until 2:00 am.  By that point they said I would definitely be there until morning when Dan could come get me unless they were going to admit me…at 2:00 am they still didn’t know what they were going to do.  Back in the ER to get a 2nd blood patch (at least I thought this was the problem). Hopefully this will be the last procedure I have in 2015 (If only this were true!)

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This was a smile of relief.  They gave me morphine!

All tucked in for the night at Sparrow. Looks like I will be here for a little while, likely until Monday when full staff is available for testing. But I am nice and warm, my pain is being managed and it is very peaceful.  Counting all my blessings on this very very cold and blustery evening.

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ER Visit #2: Blood Patch

So the pain didn’t go away on its own…I could not stand up at all (but I could continue to lay down with no pain).  So took me in to Hayes Green Beach Hospital Emergency Room (I should have gone to Sparrow, because I don’t think these people had ever actually done a blood patch before, but the convenience won out and I paid the price).

So what is a blood patch: An epidural blood patch is a surgical procedure that uses autologous blood in order to close one or many holes in the dura mater of the spinal cord, usually as a result of a previous lumbar puncture. The procedure can be used to relieve post dural puncture headaches caused by lumbar puncture (spinal tap).

I ended up getting the blood patch. It was some of the most awful I have experienced to date.  They had me lean over simply holding onto a pillow while they not only shove a needle into my spinal column while also trying to draw blood out of my hand (which didn’t go so well).  The nurse and Dr. were so nervous it was weird.  The moment they started, the nausea hit and hit hard.  My coping mechanism for the nausea was yawning.  So now I have a needle sticking in my back, I’m extremely nauseous and every time I yawned the pain was excruciating.  As soon as they finished they did give me Zofran and that seemed to help a bit, but then the diarrhea hit and wouldn’t stop.  They finally brought in a potty chair.  During the time that I was supposed to be prostrate in bed I had to keep getting up to sit on the chair…yes to much information, but this blog is for that sort of thing…a place where I can speak freely about what really happens.  The nurses left Dan and I in the room alone with all of this happening and we had to keep calling for someone to come in and empty the chair.  The procedure, the service, and everything that occurred during this visit was horrible.  It was also one of the most embarrassing and painful visits to an ER I have ever had.

Ok enough drama for the day. I now have a Drs note that says I can’t do
anything for 48 hrs.  So off to bed I go!!!!

What a hell of a couple weeks. Not really sure how my head feels yet but it seems to be better.

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Home now and feeling some better but comfy on the couch hangin out with the fam eatin pizza.  Life is much better now smile emoticon. Thank you for thoughts and prayers over the past 2 1/2 weeks when this all started. Hoping and praying that by Monday I will be feeling good and ready to go back to work.

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Spinal Headache

My plan was to write a post today with good news that the headache had subsided with all but a trace of it remaining. I felt great this morning went in to work. Around 10:30 I noticed a slight increase in pressure in my head and by 11:45 it was a full blown massive headache. I tried to push through. I did some work but by 1:00 when I dropped my badge and went to pick it up I felt like someone had kicked me in the head. I rested my head down on my arms on a chair and the pain subsided but returned with intensity.

I finally made my way out of work to a dr apt I had for today with my allergist. He suspected that I had a spinal headache from the spinal tap I had at the ER the other day. GREAT!!!! So I laid in my car for awhile not knowing how I would get home but finally worked up my courage knowing that laying down at home was the only thing I needed. I stopped on my way home to lay down and finally arrived home, knuckles white. I was in so much pain (even more than the migraine).  And now I lay here with very little headache knowing that if I have to stand up the pain will come piercing back.

Ugh! Just grateful that laying down gives relief. Now if only I could find the tv remote. Haha! The saga continues!!  I’m hoping that by noon tomorrow all will be well. Otherwise I have to go in for a blood patch to stop the spinal fluid from leaking. Luckily Dan is working at home tomorrow:). It’s the small blessings that I am counting tonight!!

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