Update

I realized I haven't done an update on the blog, even though I've sent out an email to most who check the blog for updates. The team is pleased with my progress (as am I), and since I'm from so far away, they planned to keep me over the weekend and discharge me Monday so that the weekend doctor (who was my admitting doc at the outpatient clinic) could monitor and play with the preventative drugs). Typically people who are local follow up within a week at the clinic. If I had been doing that, they likely would have discharged me Friday. I do not plan to return here. My treatment plan and recommendations will be forwarded on to my neurologist in Kansas City for him to follow and monitor me.

They tapered me off of the IV drug DHE and switched me to its oral form, methergine yestesrday. It seems as if the DHE is what was helping me improve during my stay here, because unfortunately my headache has escalated with the timing of it being tapered off. Three abortives (thorazine, lyrica, and toradol) have done nothing to knock it down. I'm up at a 4/5 pain level, which I have not been at during my hospital stay here. I do not know what that means for my discharge tomorrow. It's possible that the methergine pills just haven't had a chance to start working. It's also possible that they don't work as well as the DHE, or at all. So please pray for an effective preventative regimen as I leave here.

I have hope that I will get better.

A New Family

Before I left for Michigan, I asked my friends and family to specifically pray for: 

My heart and attitude to be open and willing to their treatment. I'm very much looking forward to this opportunity. But being hospitalized, sharing a room and a bathroom with a stranger for 7-10 days, Chad staying at a hotel... this doesn't sound fun.

I look at that request and the treatment I am receiving and think that I have such an amazing God who has taken care of me. And not only has he taken care of me, but done so in a way that blows me away. That is more than I could have even asked for. The head pain unit is a special place full of unique individuals all in the same situation. We all have severe, daily head pain that has been unresponsive to treatment. And we have tried everything out there. We are such different people from each other. Yet we get each other. We have an instant bond, and it is unique and amazing. In a way, I wish I wasn't separated geographically from them. And it's weird to think I may never see them again. But they hold a special place in my heart, and I will think about them and pray for them so often.

I got to see the third therapy dog that visits regularly. Meet Cali:

Peaches the Therapy Dog

Meet Peaches, the therapy dog:

Last night was the first night I finally got up and around the unit because my terrible spinal headache was gone. I thought I was going in for a nerve block, but the pain anesthesiologist recommended a blood patch to alleviate my positional headache from the spinal tap. Except that procedure made my back incredibly sore, feeling like I had thrown it out! There's always something.

Last night I ate in the dining room, which all the patients are encouraged to do. I figured Chad and I would sit together, instead of sitting in our room like we have for the past 5 days. I walked in, and all the other patients were sitting together with 2 tables pushed together. One welcomed me with a warm smile and said "oh come here, we have a chair for you!". I didn't realize or expect the patients to be so connected and friendly. I had been such a hermit from the spinal headache. After dinner, there was group with the therapy dog. And it was supposed to be game night, which Chad brought games to. But I had found out that another patient played guitar, but was too shy to play for others. I figured anyone who brings their guitar to a hospital has to be good, right? As in, better than me. So I asked the rec therapist if this patient could bring his guitar to group. He was real reluctant to play for everyone, so I told him I'd open for him with kids songs. Ha. That made him feel comfortable enough, and he didn't even let me play. Probably because he had such a nice guitar he didn't want anyone else touching it. So it turned into a nice evening with sweet Peaches and great music.

Many Things To Be Thankful For

I feel overwhelmed with  gratitude by circumstances and caring individuals in my situation while in the hospital.

I am thankful for...

• Chad being here with me and his care and patience.
• The flexibility that Chad's job provides for him to work from wherever he is, including my hospital room.
• Sick time at my job so that I can be away from work to get the help I need.
• My sister for watching my pup.
• FaceTime to be able to talk to my sister, nieces, and parents.
• Mail to brighten my day!
• All of the friends who have flooded me with messages and support and prayers.
• A friend who called and prayed for me.
• Insurance. I don't even want to know how much this program costs. (Actually I do, but because of insurance, and me being $200 away from my out of pocket max, I will pay  no more than $200... I think.)
• The nice, nice, nice staff here. Did I mention they're nice?
• Back-up meals and food options from the cafeteria food that is getting old, fast.
• The 'kitchen' on the unit with pop and ice cream (and Chad always finds chocolate milk in there).
• Drugs that work to decrease pain and change my brain chemistry.
• My neurologist not being proud and referring me here (so many others are frustrated by their neurologists not telling them about this place, and they had to research and find out about it on their own).
• Prayers from my 4-year old niece, "Dear God, please help Caylyn never feel the way she feels now again. Amen." 

Hospitalized: What's It Like?

So I've had a few questions from friends about what it's like in the hospital, and figured it might be worth giving a detailed post. No, I don't wear a gown that's open in the back, and no I'm not bothered every 2 hours with vitals.


I am at Chelsea Community Hospital in Chelsea, Michigan on their head pain unit, which is the inpatient program of the Michigan Head Pain and Neurological Institute. So I am at a regular hospital, which means regular hospital room, regular hospital bed, regular hospital food, etc. But I wear my normal clothes. I have my own TV in my room with cable, and obviously my computer with internet. The room is 'semi-private', with just a curtain separating me from my roommate. We share a bathroom in our room, which is a decent size with a shower. Currently I do not have a roommate. There are 20 beds on the unit and right now there are 12 on the unit. They're getting 2 admits tonight and 2 are supposed to be discharged tomorrow. For meals, they prepare your food tray and put it outside the dining hall and you are supposed to go get it. I have yet to do that since I haven't felt well enough. Either Chad goes and gets it for me or the nursing staff brings it to me. They want you to get up as much as possible, so you can eat in the dining room, or bring it back to your room.


I am on IV drugs every 8 hours, which they call your protocol. Currently I am hooked up to a constant saline drip to help with my spinal headache from the lumbar puncture. Between the protocol, you can request an abortive drug, up to 3 a day.

Every weekday, they have 'rounds' (which is more like treatment team at my old job at the psychiatric hospital), where you go in and meet with the treatment team. But you mostly talk to Dr. Saper, the attending physician and director of the program. He started this program in 1978, as the first hospital specialty program for headache patients in the world. Also in rounds are the Physician's Assistant is in there, along with the psychologist, anesthesiologist, nurse, and other people that I don't know who they are. On the weekend, the doctor doing rounds comes to your room. During the week, they offer groups throughout the day, around three a day, lead by psychologists, nutritionists, and recreational therapist. Some class titles are Nutrition, Relaxation Techniques, Spiritual Wellness, Living With Pain, Pain and Mood, Coping with Pain, Relationships and Pain, Taking Charge: About Exercise, Care of the Neck, Yoga, and visits with a therapy dog!

Chad is here with me, and it is great having him here. He is staying at an inn on the hospital campus, so he walks through the woods on a trail for 5 minutes to get here. The security is really laid back (or non-existant?), because he can just wander in, go get me my food tray and more water in the unit kitchen.

Let me know if you have any other questions about what I'm doing here. It's a great program, and I am under great care. I'm grateful to be here and know I'm on the road to recovery. 

Laying in bed getting my IV treatment.

The Good News and The Bad News

The good news is my cerebral spinal fluid is normal and has no infection. And my pressures were normal. The bad news is, I have a terrible spinal headache whenever I am upright. They gave me a 'binder' to wear, which is like a huge elastic band around my waist, which is supposed to keep the CSF from dropping with gravity. The good news is, this 'binder' sucks in all my fat. I'm supposed to drink caffeine to help my body replenish CSF. The bad news is, one of my drugs makes pop taste like metal and I don't like the taste of coffee.  The good news is, adding hot chocolate and cream to coffee is actually not that bad.

MRI of my spine/neck is still on for this morning. Nerve block is postponed until Monday.

Harpo, the therapy dog came to my room. What a sweet pup. He was a cross between a poodle and a lhasa opso. Wish I had gotten a picture for you guys.

Is This Real Life?!

So I've been at Chelsea Community Hospital in Michigan at their inpatient headache unit for 24 hours. So far I've been pretty busy. I've had 3 IV treatments (zofran, benedryl, and DHE), my nightly meds (topamax and doxepin), and one abortive (I chose toradol, and my other choices are thorazine, flexeril, keppra, skelaxin, and baclofen). I also had a lumbar puncture so they could check my spinal fluid pressures (which were normal) and they will send the fluid to be tested for infection. I've met with the team (Dr. Saper is such a nice guy, and my meeting with them seemed more like a pitch for music therapy (which he seemed interested in hiring) than discussing my treatment goals. And he knows my neurologist at home... "Any friend of Charles is a friend of mine."), met with the physicians assistant at length, the anesthesiologist, and psychologist. Phew!

Tomorrow, I will have an MRI of my neck because they want to see the spine, and then they will do a nerve block.

I've been pleased with their responsiveness to my needs and questions. I ask for something, I get it.

So, how am I doing? Well, it's still pretty early. But, I have responded to the meds. My headache will decrease one pain level after the meds (on a scale of 0-5). This last dose of DHE 2 hours ago was finally a full dose. We'll be working to find some IV drugs that work, and then likely switch them to orals. And they also want me to try as many abortives, since now is the time to do it, and to see what does/doesn't work. Then hopefully I can go home with at least 3 abortives (to take on an as-needed basis when I have a bad headache). At this point, I don't have any successful abortives to use.

All the meds are making me feel.... weird. I think David depicts it pretty well: