Lessons From Headache Camp

I’ve written several articles on my time during Headache Camp. It’s a term I use for the in-patient stays I have been through at Jefferson University’s Headache Clinic in Philadelphia. I’ve now been a total of four times, the most recent in October 2015. This last time, I tolerated the continuous IV infusion of Ketamine the best I ever have.  I felt more coherent and the recovery time at home has been quicker than before.

I thought I would share with you lessons I’ve learned from being in the hospital. My perspective is written specifically about my time at Headache Camp, however I hope these observations will help anyone who goes into the hospital for in-patient treatment, for a one-day infusion, or even to the ER.

  1. Bring Comfort. My best friend hand crocheted a purple blanket for me and I always bring it. My first hospital stay, my boyfriend had the genius idea of decorating my room with pictures of amazing places found in a Nat Geo magazine. It’s now a tradition. All the nurses appreciate the smell of my room, filled with lavender and peppermint oil to calm and relax my muscles. I’ve even had a masseuse come in during my stay. It’s so hard to be in bed for so long and my muscles tense up. Sometimes the pain from my neck and shoulders can be as bad as the Migraines. Making a tranquil surrounding will put you on the path to healing.
  2. Have Visitors. My first trip to headache camp was for a Lidocaine infusion (the subsequent three times have been for Ketamine). I wanted to do this on my own. I was excited to just relax, I needed a break from the world. The doctor discouraged visitors, so I thought I could handle it myself. Then the hallucinations came. And the uncontrollable sobbing one day. I would call my mom or boyfriend. I was so incredibly out of it that the words I was trying to form wouldn’t come out. My mom thought I sounded like I was black-out drunk, but I was frustrated that I didn’t make any sense. My next stay, family took turns “babysitting” me. Having loving people around helped to ground me to reality.
  3. Be Open. Everyone responds differently to infusions. Whether it’s just for a day or 11 days, you don’t know how your body and mind is going to process the barrage of medications you’ll be receiving. During one trip, I was seeing big improvement and for the first time in years I felt like the fog had lifted. It was an amazing feeling I thought I would never have again. Sadly, I was right. My feeling of normalcy only last a few hours. I became very depressed and blamed it on myself for getting my hopes up. Then one of the doctors told me that she had seen this multiple times before. It’s not always a steady upward progression. There can be relapses in the hospital or when you get home. Stressing only makes it worse. Be open to the experience. Don’t go in expecting you will be cured. Instead hope for a reduction in frequency and severity in your Migraines.
  4. Ask Questions. Write them down. During an inpatient stay, you may not remember every time the neuro comes in to see you. As my Mom wrote in “Headache Camp From My Mom’s Perspective,” each time I woke up, I’d ask her if the doctor came in. I just couldn’t remember anything. I was in a happy blissful state. Thankfully she was paying attention when the doctor came in. If you’re by yourself, write down your question. Maybe even use your phone and record the conversations.
  5. Be as active as you can. The last thing you want to do is get out of bed and walk. You may be dizzy, but it’s so important to stretch, even if it’s just in bed. Ask the nurse to help you walk up and down the hallways at least once a day. I’m a little crazy about yoga, so in more recent trips I’ve actually brought my mat and just stretched. Of course I wasn’t steady on my feet, so I made sure to have someone with me as I did it. I honestly feel that by staying active as I possibly could in that situation, I was able to recover more quickly once I got home.
  6. Ask for help. There is nothing worse than having to hit the nurse call button every time you need to go to the bathroom. I’m a grown woman, I can do it on my own! But in reality, I needed support to get out of bed and make sure I got there safely. The nurses would rather I ask than have me fall. Also having a bed alarm on kind of forces you to call them. Besides needing help from the nurses, you need to tell your family and friends what you expect of them. If you want text messages or phone calls during your stay, tell them. I found a lot of people would leave me alone while I was in the hospital and for weeks after I got home, not wanting to overwhelm me. But I felt isolated. Even if I didn’t have the energy to answer the phone or reply to a text, just knowing that someone is thinking of me means the world. Set those expectations beforehand if possible.
  1. Expect to be very dysfunctional. I’ve heard of other people prepping for headache camp and bringing books or wanting to start on Holiday cards. That is incredibly unrealistic. You will sleep a ridiculous amount of the time. When you are awake, you may have double vision making watching TV or writing a card impossible. And seriously, stay OFF your computer or phone. You don’t want to send a completely incoherent FB post or “drunk” dial an ex. If you want to communicate with people, plan in advance as to whom you are allowed to talk/text with or ask a family member to communicate your status for you.
  1. Understand your next steps at home. You’ll receive detailed, written instructions before you leave the hospital. That’s great, but make sure you understand it and if things are bad when you get home, understand what you should do. During my third in-patient stay, I had a PICC line inserted. The day after I left the hospital (and was 200 miles south of the hospital in DC), I woke with a horrible pain in my arm where the PICC line had been. I reread the instructions, which said that if this happens I needed to immediately call the doctor. There is a risk of forming a blood clot, which could potentially be deadly. I called my doctor at Jefferson and then proceeded to my local hospital. Turned out that there was no clot, but it was better to be safe than sorry.

PS- Bribing the nurses with candy goes a long way. My recent stay was near Halloween, so my mom brought in a pumpkin bucket filled with candy. It was much appreciated. You could opt for something healthier, but where’s the fun in that?

If you’ve ever been hospitalized, what things made your stay better?

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