I'm An Advocate

Through this journey of dealing with my migraines, I would say I am a much better advocate than I was before I became sick with chronic daily migraines. I used to go to my doctors appointments, hoping they would have answers, listening to what they had to say, wishing they would cure me. But that didn't happen! Along the way, I have changed into an advocate for my own health. 

I'm in charge. I'm the one with the pain, I know my body best, and I'm the one paying the bills, so I am in charge. I would say, for the most part, I have had excellent care by my healthcare professionals. However, if I don't see results, or you don't listen to me, or you don't treat me with the respect I deserve (hasn't happened yet), or I think you are way off base and I don't understand your treatment, then I fire you and move on.

I'm persistent. Being an advocate means you don't wait around. Sometimes I have to be patient and wait for the drugs to work (or see if they're going to work... I hated this!), but when I needed a response and wasn't getting them, I've learned the best way to get what you need was to show up in the waiting room so you cannot be ignored.

I'm educated. I know so much more about headaches and migraines than I did before, and I have so much more to learn. Knowledge is empowering and makes this disease not so scary.

I ask questions. You can't become educated if you don't ask questions. 

I educate others. I feel it's just as important to educate the general population about migraine and how it affects me. This will help them understand me better, help them interact with me better, and maybe help them someday in the future with a loved one who may have migraines. An important point that I try to add into conversation when someone asks me how I'm doing: migraines are a genetic neurological disease for which there is no cure.

I have no idea why God has chosen that I have been dealing with chronic migraines. And I may not ever know that answer this side of heaven. But one blessing out of this is I have become a better advocate for myself which can generalize to advocating for myself in other areas of my life. Also, I am much better equipped to advocate for family members' health care needs. 

In other news, how are my headaches doing? The past week has been better than I was before. Which means I'm still improving! I'm not waking up with bad headaches. And when my pain is spiking, it is because of noticeable triggers, as opposed to an unknown reason to me. I have medications I can take that will bring the pain down, but I have also laid down and slept twice to eliminate a migraine, which is amazing! This past week I only had to use 3 abortives and the week before I used 6. I felt so good on Christmas day, that Chad and I helped his cousin's wife do chores on her family farm. It was a fun experience for this city girl! We fed and watered the cows, steer, pigs, and chickens.

Wearing Chad's Uncle Jerry's size 15 boots!

Chad's make-shift farm clothes, including moose pajama pants
he received in the guy gift exchange.

Headache Advocacy Petition

From The Alliance for Headache Disorders Advocacy

HELP END THE FEDERAL NEGLECT OF CHRONIC DISABLING HEADACHE DISORDERS. SIGN THE PETITION

Migraine, cluster, and other chronic headache disorders cause tremendous suffering, disability, and economic costs in the US.

Federal research funding agencies, such as the National Institutes of Health, have neglected this burden partly because the Members of Congress with oversight of these agencies are unaware of the huge scope of the problem.

A US congressional hearing has never been devoted to headache disorders. We seek to educate your Members of Congress. But we need your help.

Right now, we ask you to please sign an on-line petition urging congressional hearings to be held on the impact of headache disorders.

Go to: headacheadvocacy.org/petition Please sign as soon as possible. It takes only a minute.

We will deliver the signed petition directly to Congress.

Also, please ask everyone and anyone you know that cares about someone suffering with a disabling headache disorder to sign as well.

Together, we can ensure that our lawmakers in Washington, DC appreciate the urgent need to reduce the enormous burden of headache disorders.

Thank you very much.

Sometimes I Feel Sad

When I started this blog, I committed to myself for it to be positive, or rather, not a place I would complain or always be negative. That's not to say I'm always in a good mood or always have a good attitude. The truth is, sometimes I'm overwhelmed by what this illness does to me. I can become upset by the compromises I have to make. But, at times when I'm emotional and overwhelmed by the pain and the implications of the pain in my life, I appreciate my husband just giving me a hug and saying, "I'm sorry you don't feel well".

The Spoon Theory

From butyoudontlooksick.com

When I was in the hospital for my headache, the recreational therapist lead a class where she presented us with The Spoon Theory. Click on the link to read for yourself. Christine Miserandino developed the spoon theory when a close friend asked her what it is really like to live with her chronic illness. She gathered up spoons and gave them to her friend and told her friend, "you have lupus". She went on to say that a healthy person has an endless supply of spoons. But when you are sick, you need to know how many spoons you have because you have to choose to use them carefully. She asked her friend to list tasks for the day. For each thing (anything that takes extra energy), Christine took a spoon from her friend, showing that she was being robbed of something and running out of 'spoons'. By the time the friend theoretically got to work in her pretend day, she had far less spoons to use during her day. By the time she got home on her pretend day, she had 1 left. One spoon left to be able to make dinner and clean up.

I think this article is a great demonstration to help others without a chronic illness understand what it's like for us. For me, sometimes I wake up with 5 spoons because I already woke up with a bad headache. And I don't have much to work with that day. Other days, I might have many more spoons to work with that day. Not only can activities use spoons (shopping, cooking, cleaning, working), but so can talking to people who are emotionally draining or dealing with a stressful situation. On the other hand, there are things that can give me back spoons. Such as when medication works to make me feel better or activities that give me energy or make me feel better (going to the dog park or swimming).

This article was also good for me because it helped me realize the importance of pacing so that I don't expend all of my 'spoons' at once. I used to just go, go, go no matter what level was pain was at, and I'm realizing that I need to be more intentional and careful about pacing myself for the sake of my health, as it will be better for my pain level. Hopefully I can figure that out!

My Head Pain

Photo by jennaream / BY-NC-SA 2.0

Everybody's head pain is so different. I met people who had pain behind their eye or pain on one side of their neck. I feel my headache in my forehead. When it's really bad, it extends down through my whole head and I feel it at the base of my skull. In addition, I might feel pain in my neck, tightness in my shoulders, soreness in my jaw, and pressure where my sinuses in my face are. I learned through going to MHNI, that jaw pain, stuffed up nose, and pain in the sinuses can be from migraine pain, and that is definitely true in my case. Up until then I thought I had TMJ issues and sinus issues (so much for that $600 mouth guard, huh?). I am now becoming more aware that right before my head pain increases, my nose starts to get stuffed up. Interesting, huh? My headache is a dull ache. When it's not bad, it feels like pressure. When it's bad, it's an intense ache and it feels tight, like someone is squeezing a cloth around the inside of my forehead. When it's really, really bad it feels like that piece of cloth has millions of tiny pins and needles on it.


MHNI had a helpful pain scale, with objective descriptions. Pretty much each time the nurse asked me "what is your head pain level" (the annoying question multiple times a day at the hospital) I had to refer to this scale.

0 = No Pain

1 = Mild Pain

      Low-level pain, which only enters awareness when you think about it.

2 = Moderate Pain

      Pain level that can be ignored at times.

3 = Severe Pain

      Painful all the time but you could do your job.

4 = Very Severe Pain

      Very severe pain that makes thinking difficult but you could perform simple tasks. You could not do your job.

5 = Worse Possible Pain

      Worst pain imaginable; intense and incapacitating. This pain makes you unable to rest, think, or do simple tasks. It is totally controlling.

Before I went in the hospital, my daily pain was at a 3 or 4. Usually it would gradually increase throughout the day so that it was eventually at a 4. It was very hard to do my job at a 4, and I laughed at their description that a 4 means you cannot do your job. I did! But that's not something I wanted to keep up, which is why I ended up hospitalized, seeking an extreme treatment and evaluating what I can change in my life to make coping and living with pain easier. 

I left the hospital with a new baseline headache of 1 and 2. I am on a new preventative regimen to hopefully keep the pain under control as well as abortive medications to take as needed when the pain spikes. Up until this point, I have had no abortive medication that works at all, and not any preventative medication that were significantly effective. I pray that this treatment plan is effective at keeping my pain at a tolerable level so that I can work and function and have a good quality of life. 

For those of you interested, I take .4 mg of methergine 4 times a day, 100 mg of neurontin 2 times a day and 300 mg at night, 10 mg of atarax 3 times a day, and 50 mg of topamax at night as preventative medications. For abortives I have 10 mg of bacolfen, 10 mg of flexeril, and DHE injections. I am only allowed to take the first two abortives 3 times a week, and the DHE 2 times a week. 

I'm not proud of the fact that I'm pushing this many chemicals into my body. I definitely would have liked to of found a treatment that was non-drug based. Believe me, I tried. Right now, this is my reality. My brain is biologically predisposed to migraine and I have a medical condition that makes me non-responsive to traditional treatment for migraine. These drugs are necessary to change my brain chemistry and decrease the pain. I'm praying they work. I'm just thankful God is bigger than migraines, pain, and drugs.

Parallels Between the Head Pain Unit and the Pysch Ward

As I've been hospitalized for my migraine, I've realized there are many parallels between an inpatient head pain unit and an inpatient psychiatric unit. For a year and a half, I had the joy of working at a psychiatric hospital where I used music to address treatment goals such as coping skills, social skills, reality orientation, and leisure skills. It has been a humbling experience on the head pain unit to realize that the same skills I taught my patients are the same skills that I have not been and need to incorporate into my life (mostly talking about coping skills. I'd like to think I'm oriented to reality).

In a Head Pain and Psyc Unit...

Patients go to classes on coping skills

Patients do crafts for distraction

Patients take the same medications  (anti-depressants and anti-seizure among many others are used off-label for migraine)

Patients meet with a treatment team (and the patient often feels differently than what the team recommends)

Patients are drugged and in a fog

Patients' conversations and interactions are very entertaining to outsiders (either due to drugs and spacey-ness side effects or mental illness)

Staff heavily validate patients' feelings and past experiences

Patients do yoga for relaxation

Patients participate in mindfulness class

Staff take patients for walks outside

Patients are excited to get discharged and get back home, yet anxious about leaving the safety and comfort of the treatment program.

I'm getting discharged today!

The plan is to leave for Iowa today and stay with friends, and then continue home on Tuesday.

Please continue to pray for my recovery and health. This journey has just begun.

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: